Generosity

Generosity comes in many forms and for our family it has come in the style of love and charity that people have offered us. No, I can not sit here and type every little thing that has been bestowed upon us. Ever since Caleigh was born we have been blessed by so many people. It's the small things like cards, meals, visits in the hospital, phone calls, Starbucks, emails and of course prayers that make our day to day withstanding & beautiful. There have also been the large gifts that seem to make our lives easier right when we think we can't make it. No matter what we have been blessed with small or large, our family is forever grateful to the loving human spirit of our family, friends and those of you whom we might never meet.

One such gift this week was from the members of DFW Charity Racing League. This group started with a loving couple whose daughter, Payton, was born with many brain deformities. You can read about her story here. They decided to give back and help other families in need. Through friends of ours, who happen to be a member of the league, they found out about our family. Back when Caleigh was in the hospital (June) they all got together and raised money for a gas card to help with us driving back and forth to Fort Worth. This time around the amazing group donated diapers and wipes. A LOT of DIAPERS & WIPES!
I took all of them out of the boxes and made a huge pile on the floor. It was fun...you should try it!

Such caring people. We can't thank them enough for everything they have done for our family. If you have a special needs child locally they can help with some of your none monetary needs. Just check out the site. And if you love cars and racing and want to do a good thing while having fun, be sure to join their group.

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Another wonderful person is Caleigh's physical therapist. I had showed her a new chair that I wanted for Caleigh. It's still fairly new and I was certain insurance or medicaid wouldn't pay for it. I was really just wanting input about the chair. Later that afternoon I got a call from her telling me not to buy the chair because she can get it through the therapy's durable medical equipment company and we would only have to pay $50. WhooHooo! I was really excited. Two weeks later it arrived and when I asked about paying for it she told us not to worry about it. Apparently, each therapist receives credits towards their DME company each quarter. Our therapist had just enough to cover the chair ($75) and she said that she couldn't think of anything better to spend it on. So sweet of her!
Everyone's heard of the Bumbo chair and we have one for Caleigh, but she quickly outgrew it with her chubby little thighs. The Childrite Therapy Chair is made by the first company to import Bumbo chairs to the USA. The company that makes Bumbo chairs was not interested in producing a special needs version and so the Childrite seat was born out of Conroe, Texas with a lot of input from therapist and parents. Each chair is hand made in Fort Worth. I'm in love with the Childrite. It gives Caleigh a whole new perspective on things and it's easy for us to take anywhere. Plus, it gives me a new perspective on Caleigh. Trust me you'll be seeing a lot of pictures with the chair soon. And if you have a special needs child I highly suggest this chair.

Click Link Here to view Childrite Therapy Chair

I'm also excited that this is our first special needs equipment purchase. Some of the stuff out there can look so scary and the farthest from normal. So I'm excited that this looks just like a bigger bumbo. I guess I'm just not ready for all that is involved with the special equipment of a special child.

Speaking of not ready.....I've received so many comments on the Welcome to Holland poem that I posted a long time ago. I'm putting a link to it in the Good Read section of this blog.

Our Thanksgiving

Caleigh's first Thanksgiving at home was a huge success. It was a wonderful feeling to have her with us when we made the rounds to each grandparent's house. The morning started out with a little tradition that I started last year. Is it a tradition when you've only done it for 2 years? Anyhow, last year we did hand and foot prints in the NICU and I turned the hand print into a turkey.

Of course I was much more creative then. This year I used paint and having a squirmy 1 year old was a bit of a challenge. Including not having enough time to make a fantastic turkey. There's always 2009 for that perfect turkey print!

We hope everyone had a great Thanksgiving. Eric and I know that we have so much to be thankful for this year. Caleigh's health, our supportive family and friends, the realization that life is just too precious for words. There are so many things that run through my mind. What a blessed day to be thankful for.

Tomorrow we are putting up the Christmas tree.....even though we just took it down in March.

Cortical Vision Impairment

We have been trying to get vision therapy for Caleigh for a couple of months now. ECI moves so slow and then we found out that VT (vision therapy) is only offered through our local school district. We finally got the evaluation 2 weeks ago, and last week the therapist (VT) and operations and mobility specialist (OMS) came to our house to talk about their findings.

I knew something was going on with Caleigh's vision and after lots of research and a trip to the eye doctor awhile back I self diagnosed her with CVI. Many and most children with PVL have some sort of cortical vision impairment. Our eye doctor didn't want to diagnose Caleigh yet, but I wanted therapy to start asap. So I went through our ECI coordinator to get the paper work from him. It took 2 months.After evaluating Caleigh for a little over an hour in our house, the VT and OMS returned last week to go over the assessment and talk about goals and plans. Caleigh does have CVI {not news to us} but they did break down the characteristics that she exhibited.

I've colored the characteristics that Caleigh has in red.

APPEARANCE

Does not look blind

Blank facial expression

Lack of visual communication skills

Eye movements smooth, but aimless

VISION FUNCTION

Visual function varies from day to day or hour to hour

Limited visual attention and lacks visual curiosity

Aware of distant objects, but not able to identify

Spontaneous visual activity has short duration

Visual learning tiring

Closes eyes while listening

Looks away from people and objects

Consistently look to either side when visual looking

When visually reaching looks with a slight downward gaze

Turns head to side when reaching, as if using peripheral fields

Uses touch to identify objects

MOBILITY SKILLS

Occasionally "sees" better traveling in a car

Difficulties with depth perception, inaccurate reach

Unable to estimate distances

Difficulties with spatial interpretation

Avoids obstacles, but unable to use vision for close work

IMPROVED VISUAL PERFORMANCE

When in familiar environments and when using familiar objects

When told "what" to look for and "where" to look

When objects are held close to eyes when viewing

When objects are widely spaced

When looking at one object verses a group of objects

When color is used to assist in identification of objects or shapes

When objects are against a plain background and paired with movement and sound

The ones not red are mainly because Caleigh is too young to assess.

Caleigh also has Esotropia. Esotropia is the most common form of strabismus in infants, a condition that refers to any misalignment of the eyes. In the case of esotropia, one eye deviates inward toward the nose while the other fixates normally. You can see it in the picture above. Basically, when the eyes aren't aligned the person usually sees double images. We have an eye doctor appointment the beginning of December. To fix esotropia usually the child wears a patch over their strong eye for a certain amount of time per day to strengthen the weaker eye. I had already asked about this in August, but was told we should wait. I'm going to insist this time around and if we don't get the answer we are looking for then we'll have to choose a new doc. Our vision therapist is scheduled to come twice a month.

Ok, so in a nut shell Caleigh responds to objects within about 18 inches. She glances at objects for only 1-2 seconds at a time then turns away. She can track toys on a horizontal access about 6-12 inches away. Although, her tracking is very slow and jerky. In a seated position Caleigh doesn't visually reach for toys. Laying down she feels for toys and grabs for them. She is very in tune audibly to what is going on and turns to noises quickly.

Caleigh's Cortical Vision Impairment, otherwise known as Neurological Vision Impairment, is from her brain injury. Caleigh's eyes themselves are fine. The problem lies within the brain. There is a scale that they measure CVI by. Using the above characteristics the scale goes from 10 being normal vision and 0 being blind. Caleigh was ranked at 2-3, which means that she displayed a significant number of visual behaviors consistent with CVI.

CVI is faceted in many ways. It is many times described like looking through a piece of swiss cheese. Some children can't see anything to the right of their nose. Some can only see a tunnel straight in front of them. Some down, some up, etc. Tunnel vision, which ever it may be, is a very common thing. Caleigh is always looking down. It looks like she is closing her eyes or is sleepy. People are always saying "oh, she's sleepy" or "oh, she's falling asleep." That drives me nuts because I feel like I have to explain, but most of the time I just agree. So NO, my baby is not sleepy all the time. We aren't sure how much and where Caleigh can see, but for now we think that her looking down is an indication. She also has photophobia, which is a dislike for bright lights. Many times kids with CVI gaze at lights, but Caleigh closes her eyes and ducks her head. It takes her a long time to get used to moving from one lighting situation to another. I've added links to more information in the Brain Food section, on the right hand sidebar of this blog.

Here's an example. In this photograph, Caleigh is actually looking at her hand. She is trying to get it to her mouth, but it looks like her eyes are closed.So, I know this is a lot of information. It is for us too. Talk of braille, tactile feeling, mobility specialists, patching, glasses, Texas State School for the Blind, special toys & books.....it's a lot. God has freed up our time away from TPN to work with Caleigh's cerebral palsy, and all it holds, head on. It is said that vision can be worked on and corrected until the age of 8. We have a long road of therapy ahead, but we already knew that.

15 Months

Caleigh turned 15 months old yesterday. I can't even believe it. Ok, I can, but at the same time looking back it really doesn't seem like we have been doing this {our new normal} for 15 whole months. We couldn't imagine our lives without her or any different.

At 15 months, just for memories sake, Caleigh is laughing and smiling daily. She still only has one tooth, but lord knows more are coming soon! Caleigh is holding her head up better and more steady now. Of course she is rolling from tummy to back and her noises are getting more diverse. She has started this whole shy thing when people talk to her. It's really cute. And most exciting Caleigh, at 15 months old is off of TPN. Eating small amounts of baby food by mouth and occasionally takes a bottle. She weighs 22 pounds and 3 ounces and is 27 1/4 inches long.

At 15 months old Caleigh is still our little miracle.

Here's a little video of Caleigh laughing with her daddy.

Make an on-line slide show at www.OneTrueMedia.com

She Looks Right We Say Left

A few days ago someone {anonymous} commented, asking if Caleigh has Torticollis. I thought I would try to explain this condition a little bit.

You can read more about it here.
I've pasted the first paragraph explaining the cause of Torticollis...

What causes Congenital Muscular Torticollis? CMT is caused by damage to or a shortening of the Sterno-cleido-mastoid muscle in an infants neck. Sometimes, but not in all cases, there is a hematoma (lump) in the muscle where it was damaged. That lump will eventually go away as the muscle heals and is stretched. The most common causes of CMT are inutero positioning, lack of space inutero (big baby or little mom), a traumatic birth, multiples (lack of room again!), and low amniotic fluid inutero.

In short, Caleigh doesn't have this condition. We have had her checked for this before. She does in fact have a serious, very strong preference for her right side. Caleigh can easily turn to her left and does so often throughout the day. We have her changing pad so that she has to look to the left to see us. We put her to sleep propped up on her left side. We do daily neck stretches as well. Us taking Caleigh to the Network Care Chiropractor has helped her turn her head to the left with ease. Due to Caleigh's long hospital stays and the amount of time on a ventilator she has this preference. I know I'm very right handed so having Caleigh to my right makes things easier and I think that the nurses in general set everything up right handed as well in the hospital. Also, this love of her right side has to do with her cerebral palsy and the balance within her brain. We're working with her and as of now it's getting better.

Excellent eye {anonymous} and thanks for asking. If anyone has any questions about Caleigh, our family or just anything please ask. I want this blog to be as informative and helpful as possible and your questions can make it that way. We love your comments!

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Caleigh has been doing wonderful during this short time off TPN. We have really watched her blossom over the last 4 days. Her hair is softer and more shiny. She looks skinnier, not so swollen, but hasn't lost any weight. She was retaining fluid from the TPN. Caleigh has been eating 3-4 tablespoons of baby food during the day compared to the one tablespoon I used to basically force feed the child. She seems to be babbling up a storm and I feel a first word coming real soon. Fingers crossed that things continue to go great.

Here's a video of Caleigh's new trick. Rolling from her stomach to her back. Don't miss the big smile at the end!

Make an on-line slideshow at www.OneTrueMedia.com

Happy Halloween...late

Here are several pictures from Caleigh's first Halloween at home. No trick-or-treating because of hibernation. I'm hoping next year we will be able to dress up and hit every house in the neighborhood.

A few weeks ago, Eric and I took Caleigh to a local pumpkin patch. She really wasn't interested in the whole thing. When she wasn't crying she was yawning. Maybe next year she will be a little more excited.

Little Eric Jr.

Is this considered baby cruelty?


This year Caleigh's Grammie made her scrubs for Halloween. She was a surgeon. Pretty darn cute if I say so myself! Dr. Gray. I think it meshes very well with Caleigh's personality. Plus she looks adorable in a surgical cap. Such a long way from where we were last year, but still just as cute.

Christmas came a little early.....

Last night Caleigh accomplished a huge milestone. It was our first night OFF TPN! That's right, as long as Caleigh stays hydrated... we are done with TPN. We have been waiting for this day since she was born, almost 15 months ago. I can honestly say that there were many days that we thought Caleigh would need TPN forever. It's been 5 months and a few days since Caleigh had the STEP procedure and she is a great statistic for the surgery. When we decided to do the STEP our hope was for increased enteral feeds and less TPN. Since it is a fairly new surgery the statistics out there were few and far between. We only had hopes and dreams of today. TPN does horrible things to a persons body. We were amazed by Caleigh's sudden 'healing' from her liver damage. It bought her the time she needed to learn how to take more food in after doing the STEP surgery. We are so thankful that we have had IV nutrition, but it is such a blessing to let it go of the necessary evil.

Yesterday, we went to see our GI and once again Caleigh had gained quite a bit of weight. He said 'that's it, we are stopping it.' There was a few 'fluffy' comments and then we sat down to make plans.

We are going to keep Caleigh's central line for awhile just as a precaution, but when it is clear that she won't need it, we will schedule surgery to have it removed. It happens often that TPN kids need fluid to stay hydrated because they are so used to constantly having a fluid balance. So we are waiting to see if that's the case. Right now we are giving plenty of pedialyte in between feedings to try to avoid that scenario.

Caleigh did really well with the change last night. She woke up right before her 4am feeding and was hungry. As soon as the pump came on she fell back asleep. I'm hoping that losing the TPN every night will help her sleep better. She won't be filling her diapers near as much as before. This morning she woke up a bit early, but she was in a great mood. Usually she screams till I put her on the couch, help her find her hand to chew on and turn on Little Einsteins. This morning Caleigh was all smiles as soon as I picked her up.

We cut Caleigh's formula back to 20 calorie and we are anticipating her to lose a few pounds due to the decrease in calories and discontinuing TPN. Right now she is about 24 lbs and if she gets down to about 22 and stays there for awhile that would be ideal. Caleigh has gained so much weight that we had a to buy a new car seat, she outgrew the weight limit on her old one. I never thought we would be trying to make Caleigh lose weight. A little irony, I guess.

Time will only tell, but we are praying for this new trend to stick. If this wasn't RSV/FLU season we would throw a big party for the occasion....maybe in the spring.

At this point I am going to enjoy more parent time with Caleigh. Another, super, wonderful revelation is that we will have our dinning room back to normal very soon!

Back On

My hiatus is now officially called off. I'm sure everyone is just giddy with delight....
{insert your sarcasm here}

Of course a lot has been going on, including but not limited to: Pumpkins, Crying, TPN, Cancer, March of Dimes Signature Chefs Event, Bottles, Costumes, Teeth, Diaper rash, Fat baby comments....wow, I could go on and on.

I guess I will start from where I left off. Eric and I left Caleigh at home with all 4 grandparents for the first time so that we could go to the March of Dimes Signature Chefs Event. It was amazing, a wonderful time. Yes, I called to 'check' on things several times, but it was nice to step away for a bit. I still don't have my copy of the video that was shown, but when I get it, I'll post it here. The grandparents did a great job. Caleigh is a lot of work. She knew something was up, but they all survived. Most importantly, Eric and I survived our first evening away from our baby girl.

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How's Caleigh?


So much has changed since I last wrote.

Caleigh now has a tooth (bottom right), Yay! It was an ordeal, but after much rubbing from mom and dad it finally came through. Since Caleigh isn't able to get anything in her mouth on her own; her gums don't get wore down like they normally would.
We are now doing 8 hours of TPN and at our last GI appointment it was decided that Caleigh would be OFF TPN before Christmas time. She is gaining too much weight here lately. Caleigh weighs 24 lbs and she had been gaining about a pound every week and a half. That's a really fast rate for her and our GI said that she is getting fat and he won't be having that on his watch! Of course, I'm not even mentioning this to our little rebel.

Caleigh has also started taking water and pedialyte from a bottle. She doesn't really like her formula and I don't blame her at all. That stuff doesn't resemble anything close to milk and it smells horrible. I went to the store and literally bought one of every bottle out there. Caleigh ended up liking the mam, it has a flatter nipple than regular bottles and it came with a very slow tip. We've now worked up to the #2 nipple but I think the #1 helped Caleigh control what was coming out. I think the fact the she is teething now has really helped this transition. We were told that Caleigh would never get her suck back.......... huh, guess she proved them wrong again.Caleigh seems to be doing about the same with her baby food intake. We are hoping that she will get a little hungry with the decrease in TPN and then put two and two together.

Caleigh is now on all bolus feedings. This means she eats every 3 hours. No more continuous feeds. Caleigh seems a lot happier. Mainly because she doesn't feel like she just ate Thanksgiving Dinner all day every day. She gets 95ml of 22 calorie formula at each feed through her g-button. In between those times we work on baby food and water.


The past week Caleigh has been having a lot of trouble with diarrhea. We gave imodium like crazy and nothing seemed to help. She wasn't happy at all and I'm pretty sure we didn't sleep for over a week. Caleigh had her classic SBS diaper rash. So on Friday night after a lot of crying and screaming we finally gave up and decided it was our old frienemey Bacterial Overgrowth. We started Xifaxin again and within 3 days Caleigh is back to her normal self and her diaper rash is healing up. It had been 6 weeks since we last had this issue and hopefully it will get less and less with Caleigh's feeds going up.

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I wanted to say Welcome Home to Carter Cates. After half a year in Boston and after a multi visceral (6 organ) transplant {and lots of prayers} he is now back home in Texas. You might have seen Carter on the local news and even headline & CNN. What a movie star he is! Carter and his family still need lots of prayers and support. You can read his journal here.

Also, I wanted to have everyone say a prayer for little Emerson White. She is recovering in Omaha from the same surgery that Carter had. She hasn't been doing well and I know how hard it is to sit and watch helplessly as your child is sick in the hospital. Pray for Emerson's strength and also the strength of her mom. You can read her journal here.

I wanted to thank everyone for your kind words regarding my Gimmi. As always, we appreciate your thoughts and prayers.

Caleigh wants to shout out loud to her Uncle Heath. Happy 21st Birthday! We Love you!