The Best Anniversary Gift a Parent Could Ask For

Yesterday was mine and Eric's 8th wedding anniversary. Time seems like it has flown by for me. Ask Eric and you might get a different answer! He is my rock, my support and I love him more and more each day. Watching your husband be completely in love with your child is a beautiful moment. It takes marriage to a whole new level...a better level.

Before I get all teary eyed, (ok, it already happened) drying it up now...

Ok, so Caleigh gave us the best anniversary present yesterday. Your asking, how? She's only a toddler, right? Well, we had an appointment with our surgeon. Within 15 minutes he was pulling Caleigh's central line. So for 1 year, 4 months, 2 weeks and 1 day Caleigh sported the central line, and just like that it was gone. No more worrying about blood infections, yeast infections, being sterile, gobs and gobs of tape, heparin, saline flush, changing caps, weekly blood draws and not being able to get Caleigh's chest wet. This was the most wonderful gift a parent could ask for and we will always remember that it happened on our anniversary.
It's Gone! {happy dance}{happy dance}

Last night I gave Caleigh her first crazy, wet, water everywhere bath. It was a lot of fun. I still find myself being very cautious around the area just out of habit. I guess it will take some getting used to. This is huge, I just don't know how else to describe it! Huge.

Caleigh also had a hearing test the other day and she passed. We were concerned with the amount of antibiotics she has received so this was just to check. We may do an ABR which measures hearing from the inner ear to the brain stem. They would have to put Caleigh under general anesthesia to do this. Normal hearing tests don't measure this part. So an outpatient procedure would be the best way to get those results. Sometimes children can hear but they have a constant static noise as well. The ABR would be able to tell if that is happening. I think Caleigh's hearing is fine. Just the other day she started responding to us telling her to hold her head up. Everytime we say it she holds her head up. It's wonderful to get that reaction. So we will watch her speach development closely and probably do the ABR within the next 6 months.

Things have been really busy closing out the year. I'll try to get Christmas pictures up soon.

Christmas 2008

This year the annual Gray Family holiday card did not get printed and mailed out. Sorry, but lucky for you we have the blog. So enjoy and hopefully next year I will get my tail in gear earlier!

Yesterday was my birthday. It was a nice day. It was even more special being able to spend it with Caleigh and family out of the hospital. It was the big 27. I've never really been to terribly excited about my birthday. It's just another number and just another year. I'm pretty non complacent about it. Ever since Caleigh was born 'another year' seems so much more important though and I am very thankful for that. I woke up yesterday morning thinking about last year and where we were at. Caleigh was recovering from a very tough surgery and our wonderful nurses and staff at the NICU sang happy birthday to me. That was a wonderful present and I will never forget it. This was one of my good memories from those days and I really do cherish it. My 27th year is sure to be better than my 26th without a doubt.

On to Christmas.... Eric is at the firestation again this year so Santa dropped off Caleigh's presents and left instructions on how to handle them for tomorrow morning. I'm sure we will be able to get away with this arrangement for at least a few more years. Wishful thinking. Caleigh and I will be headed out to visit Eric in just a few hours and then we will be off to the grandparents' for holiday treats.

On a side note/Caleigh update, she is doing great. Eating more than ever by mouth and gaining a little bit of weight. Tummy bootcamp is going well and Caleigh has really taken too it. The stupid 'hat' is still a go. We had the follow-up appointment where we voiced our hate for the 'hat.' Then I remembered the Christmas spirit and decided to leave the appointment quietly. I was almost in tears over the whole thing. We have another appointment next week to check on the new adjustments. It seems to be better this time. I'll just leave it at that. We have an appointment with our surgeon on Tuesday. I'll let you guess what we will be talking about......

I wanted to ask everyone to say an urgent prayer or better yet several prayers for Emerson White in Omaha Nebraska. She had a multi-visceral transplant in June and hasn't left the hospital since. Her doctors are afraid that she won't make it through the week. Please pray for her healing and the comfort of her family this Christmas day.

You can read her story here: Emerson White

I'm going to leave you this Christmas morning with a quote from Emerson's journal. It made me smile and cry. I think it sums up the true meaning of the holidays.

"As you tear through your packages, may you always remember the greatest gift of all cannot be boxed or wrapped in paper. May you hug a little tighter and a little more often, and may you cherish every moment you are given with those you love most in this world.

Peace, love, and joy to you all…"

Stupid 'hat'

As of this morning I've given up on that stupid 'hat'!

We took Caleigh for a follow-up fitting on Wednesday. The cranial band was coming off when she slept and it was rubbing her ear. So the lady trimmed around the eyes, ears and after 2 hrs at the office, more pictures and a consult with a lady in Arizona who supposedly designs the bands; she added more 'foam stuff' to the back around the neck area. It seemed to work well in the car on the way home, but Caleigh slept pretty much the whole way.

The real test was tummy time, and boy did it fell. It's worse than it was before they adjusted it. I'm pretty tired of hearing Caleigh scream every time it falls down over her eyes. It only works if she is not moving....at all. So I called the next morning and they wanted us to come back in. We already had three appointments that day and we aren't able to make it back in until Tuesday. So as of this morning I have given up on it until Tuesday. I'm tired of Caleigh crying because it is uncomfortable. I'm tired of adjusting it. I'm tired of her tiny head sweating like crazy in it. I still hate it. I haven't even decorated it yet because I don't won't them to mess it up when making adjustments. errrrr......

Santa Visit

Several weeks back we took Caleigh to visit Santa. He was making a brief stop at Locations Photography and set up a private session just for Caleigh.

It started out ok.... I think she is contemplating what to ask for....

Eventually the flashing lights were a bit much for Caleigh's eyes......

and then....she realized who was holding her! The big man can be scary, it happens.

I think she might of squeezed in a few requests before the screaming started. We'll see Christmas morning if he was able to listen. Lord knows Caleigh has been a good girl this year, minus the whole surgical drama thing, but overall a very good girl.

I worked at Locations for a few years pre-Caleigh and I just wanted to thank everyone that helped out with this session. Caleigh isn't the easiest child to photograph. It's hard when she can't see far away. There will be family pics to follow soon......

Cool Head Gear

After going back and forth for over a month Eric and I finally decided to go ahead and try out the cranial band for Caleigh. I'm not sure why I was totally against it? Maybe the look, maybe the hassle and maybe because some of our doctors think that it is merely cosmetic and not necessary.

Zealous readers may recall that we were thinking about the cranial band because Caleigh has Plagiocephaly. In Caleigh's case the right side of the back of her head is flat. Because of this her ears and eyes are misaligned and the front right forehead is pushed forward a lot. This can cause developmental delays, vision problems, and basic balance depth perception issues. Lord knows we don't need any help with those areas so we decided to go ahead with it. As long as Caleigh's brain is growing correctly we should see some small improvement in the next week or so. How long she has to wear it depends on growth. Initially we were told somewhere around 4 months. I'm praying that it takes a lot less time, but well see.Caleigh is just now getting used to the band and I have to admit so am I. I hated it the moment we put it on, but everyday has gotten better. We are still having issues during sleep times, but I think it is getting easier. I'm pretty sure I wouldn't won't to sleep in one either. We are still doing spot checks, taking the band off to make sure there isn't any rubbing or red spots. As soon as we get a perfect fit Caleigh will be required to wear the band 23 hours a day. I'm going to try to decorate the band in the next few days so it won't be so medical looking too.
We also took a trip to the eye doctor on Friday. I really hate going to doctor appointments these days. Everyone is coughing. There is snotty kids everywhere. The Germaphobe in me shudders the minute we show up. Eric and I have a system. One of us does the touching of the doors, sign-in sheets, dealing with paperwork and the other stays outside in the hallway with Caleigh. We have a huge thing of purell that gets used often. Hopefully this tactic will be enough to make it through the winter.
So the eye doctor....Caleigh still has a slight far-sightedness, but not enough for glasses. It was hard for him to get a great look at her eyes because she closes them the instant any light is shined in. The not so big shocker was that the doctor wants to do surgery to fix Caleigh's eye crossing or strabismus. I knew this was coming. Patching isn't really an option because her strabismus is variable and both eyes do it. Eric and I are still thinking and reading about surgery. The eye crossing has to do with a muscle imbalance. The muscle imbalance has to do with cerebral palsy. Since her strabismus is so variable it will be the doctor guessing as to how much work needs to be done to the muscle. This one surgery could lead to many eye surgeries because cerbral palsy is variable, Caleigh is still growing and her muscles are still changing, and the doctor could over correct the problem making her eyes turn outward. Generally children with CP have 2 or 3 of this surgery to correct the problem. The good news is that it is an outpatient surgery and Caleigh would be home the same day as long as there isn't any issues, but we all know how much Caleigh loves surgery {sarcasm, sarcasm, sarcasm} So we will think it over, talk with our other doctors and of course research some more.
We have been busy and that helps take my mind off the overall picture. Throwing it back to the present. Thank you to everyone that commented with encouragement and thoughtful words. I will be the first one to admit here that this is hard. It's hard seeing your child go through so much and because of this we are forever changed in everything we see and do.

How do you know

As a parent of a child with special needs, I have often wondered....How do we know what we're doing is enough? Will it work? Are we doing everything possible?

There are so many things out there to do for a child with cerebral palsy. Some are gimmicky, some have been around for two or three decades. The only thing medical professionals 'believe' in is medicine. Each of these things states that they are the best shot your child has. Who do you believe? It's not like we have done this before!

Today we went to our second conductive education class. It went really well. I enjoy seeing all the parents and children that are like us. These children go everyday, like school, from 9-3. Usually a child like Caleigh would start public school at 3 years old. I don't know about you, but that seems too early for me. So these children go to conductive education instead of public school and trust me I think they get way more out of this then they would at school. I had been thinking about what to do when we got to that point. I guess today reminded me about our future choices.

I guess I'm just having a day where I doubt my parenting skills. It happens to most parents, whether we are deciding what to feed our kid for lunch or figuring out the best way to help our child walk someday. I need to remember to go with my gut.

I'll try to get some sleep. Wake up tomorrow, hopefully feeling better and not so overwhelmed with all the choices our life has to offer.

Random Things

I've been meaning to throw in some random information about Caleigh here lately and never seem to find the time. Today I'm sitting outside during day 2 of our garage sale. I know, it's December...what are we thinking? 8 years of marriage odds and ends.....that's what I was thinking! It's cold, I think winter finally made it to North Texas. Caleigh's currently warm inside the house with her Mimi. Yesterday, Grammi took her turn. I don't think Eric and I could have pulled this off without them!

With much insistance and work we finally got Caleigh a new g-button. It took about a month between orders and home health figuring it out. It's smaller, low profile and more flexible and my hopes are that it will encourage a little more tummy time. It's called a mini one balloon button made by AMT. So far I'm loving it. It looks great! It's been leaking a bit, but they usually do for a few days after we place it.

This is the Mic-Key ButtonThis is the Mini-One

What is that band-aid type tape on Caleigh??? This is Kinesio Tape. It's tape that gives a slight stretch to Caleigh's muscles. Therapy Tape. We put it on her stomach, neck, and arms. Did you watch the Olympics? It's the same tape that the volleyball player had on her shoulder. It works and we can really tell a difference without it.

As of today, Caleigh has been off of TPN for a month. She weighs 22.5 pounds which is only a pound and a half loss. She hasn't needed any IV fluid replacement so we have decided to keep the central line until further along in the winter. Just in case Caleigh gets sick and needs IV access we would have an easier time. These next few months are vital. We have to keep her healthy.

We went to our first Conductive Education class with Caleigh. I think we are going to like it. For right now it is a private session but as she gets older we will introduce her to the classes or camps that they have. It's in North Dallas so it takes us about an hour to get there on a good day and we will be going once a week. You can read more about it at A Child Can Do All Things.

We have really started putting Caleigh on her tummy and she is finally getting used to it. I just got done reading the book 'What to do about your brain injuried child' by Glen Doman. It's a very intriguing book and Eric and I are thinking of attending a lecture in Philadephia this coming April. It's expensive, no doubt, but a lot of what they practice makes so much sense. It's all about healing the brain. Part of the program is tummy time all the time. How can a child learn to crawl when their not on their belly? Hopefully we will get a lot out of this. I plan on reading a few more of his books before the lecture.

We took Caleigh to have a 3-d picture of her head done last week. This was for her cranial band. We will be picking up the 'helmet' on Dec. 11. This is to help Caleigh's skull even itself out and if her brain is growing correctly it will work. I'm sure there will be pictures and more info. coming soon......

Caleigh still has one little snaggle tooth. Her smiles are adorable. Our OT bought us a regular vibrating tooth brush to help her 'feel' that something is in her hand, since she might not always see it. The thought behind it is that she will be able to grasp things for longer periods of time. It has seemed to help and she really does hang on longer. Caleigh has also decided that it is her new favorite teething tool. So if you got a kiddo teething buy a vibrating tooth brush and your kid will be in heaven!

Someone asked what therapies we have Caleigh in. She gets Occupational Therapy (OT), Physical Therapy (PT), Speech Therapy (ST), Vision Therapy (VT), Conductive Education (CE), Network Care Chiropractor, and we are planning on starting the program at The Institutes for the Achievement of Human Potential. We have also looked into Hyperbaric Oxygen Therapy, but I don't think it is for Caleigh right now. All together this is 8 appointments a week not including the time we spend doing Caleigh's therapy ourselves everyday. Therapy doesn't end when the therapist walks out the door.

Where did I get my fabulous hair done? Reflections Salon and Day Spa in Weatherford, TX. I've been going to Judy since I was in 6th grade. I swear she is an artist. Look her up!

A few days ago a woman from DARS (Department of Assistive and Rehabilitive Services) came to the house to set Caleigh up with their program. Our vision therapist referred Caleigh to them. First of all the woman was blind. Second of all she had the cutest service dog (Did you know that you aren't supposed to pet service dogs?). Third of all she brought with her the most annoying driver ever! I'm not even sure why her driver needed to come in our house. She wasn't an employee of the program and she sure as heck didn't need to hear Caleigh's social repeated three times! On top of that she was all over Caleigh saying how much she loves babies. Yeah, we all love babies but I'm certain she was able to read the sign on our front door. Ugh. I guess I'm still agreevated. Maybe I should complain? The woman with the program was very nice and basically at Caleigh's age they can help get her toys and things that will help with vision therapy.


Here's some pictures from doing Caleigh's turkey hand print:

And, we finished putting up the Christmas tree. Here's some pictures from that. Such a blessing to have Caleigh home this year for the holidays. What a difference a year makes.

Wordless Wednesday