A trip to the Neuro

At this point, once every 6 months, we load up and head on over to Caleigh's neurologist. I've said it before and I will say it again....I love that man. He is just the sweetest, most caring, gentle spirit of a doctor.

We arrived and there wasn't a kid in sight in the waiting room. This is an amazing task for a children's hospital, but apparently they knew Caleigh was coming. We waited for a few minutes before we were called back. Usually we wait for over an hour. So I had packed and was prepared for this scenario. It was nice not having to pull out all the entertainment in the waiting room.

So our doc comes in and I started the update process. No TPN, No central line, eating food by mouth, rolling from tummy to back, holding head 90 degrees or more on her tummy, understands simple requests like 'hold your head up' 'bite' 'no' 'bath' 'use your arms'.... I went on and on, beaming with delight recalling all the wonderful things Caleigh has started doing since our last visit. Proud mama stuff.

He sat there smiling and at times seemed surprised with what I was saying. After my long winded speech was over. He went to check Caleigh's eyes. As soon as he shined the light in her face she closed her eyes. Caleigh is very sensitive to light. So as he was trying to get her to open up, he nonchalantly cleared his throat. Caleigh thought it was hilarious and started chuckling and giggling. He sat back and said how cute that was. Then he did it again, this time on purpose. Once again Caleigh laughed. He repeated it again and Caleigh delivered one more time. It was great! Way to show off, little miss!

So he sat back once more, shook his head and proceed to tell me that he remembers the day that he looked at Caleigh's brain MRI. He said that he honestly didn't believe she would be able to do anything that she is doing. He didn't think she would make it. Of course he never led on to his thoughts during those early days and that is one of the many reasons we just love him. He did say that to others, on the street, Caleigh may not look like she is doing well, but we both know that she is doing wonderfully considering all the 'hits' she has taken medically. Then he proceeded to tell me that he completely credits Eric and I for her development. He's seen it before and parenting has so much to do with the progress of children with brain injuries. I need to get a copy of Caleigh's MRI and post it on the blog. It's pretty amazing, but it doesn't really matter because that's not what we see when we look at Caleigh.

We talked about Caleigh's seizures and the Keppra that she is on. We haven't seen any signs of her silent seizures. So the seizure plan is..... right before Caleigh's 2nd birthday, we will go in and do another EEG and then have our Neuro appt. a few hours later. We'll look for any signs of seizures and if there isn't any we will start weaning Caleigh off of the Keppra. Her brain has matured, re-wired and worked the seizures out. We are really excited about this. One more med off the list. I can't wait, it's just amazing.

Caleigh's head grew another centimeter since we last visited. That is a good rate for her age. Even though it has grown, Caleigh's head is still below the growth charts for size. This is considered having microcephaly, or a small head. Just another label. We believe this lack in growth happened during the attempt and success of saving Caleigh's liver this time last year. There's nothing we can do to get this time and growth back. We just need to work on continued health from now on.

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Last week we took Caleigh to another eye doctor. He seems to be on the edge of alternative medicine and your mainstream medicine. He has referred us to an ear nose and throat doctor. Something about the ear canals. I honestly couldn't tell you exactly what happened, but I'm pretty sure we are on the verge of meeting our next Miracle Doctor.

At our 18 month check-up, our pediatrician ordered some bloodwork to be done for Caleigh. She wants to check her thyroid. This could be a reason for Caleigh's teeth coming in late. So I called our GI doc and he ordered some bloodwork as well. Mostly our normal TPN labs, just without the TPN. We will probably go and do that in the next few days.

Caleigh's eating is still horrible. I'm still trying though. I called and talked with Our Children's House out of Baylor in Dallas this morning. They have an intensive program, but their waiting list is already out to May. They are the only feeding clinic of their kind in the Southwest and there is only 10 like them in the US. They are popular and they have great results, weaning children from their g-buttons. We are also scheduling another swallow study soon to check on things in that area.

Caleigh has been asleep for about two hours this morning. She didn't sleep well last night. So this nap was much needed. It's let me catch up a bit.

And if you've made it all the way to the end of this post. I'm asking for everyone to say a prayer or several for Gavin and his family. He just had several organs removed and is now working on the recovery.

Have a thoughtful Thursday.

All the other stuff

Here's some extra stuff that I've been thinking about lately.

Caleigh finally got her Special Tomato Chair. I used it as a high chair for one day and then scratched that idea. She refused to eat while in it. ugh.{don't you just love the enthusiasm?}

After some thought, I decided to try it in my BOB jogger. Jackpot! It works perfectly and now Caleigh can sit up to see the world. We've been going for walks everyday and I really do love the time spent outside our fortress of hibernation.
{happy to be outside}

We also bought Caleigh an excer-saucer about a week ago. She has been wanting to put weight on her legs lately and I thought it would be a good idea to have something like a stander without the medical equipment hanging out in our living room and hanging over our heads.{this look sums up the whole week}

Last night Caleigh got her third tooth, a molar. I'm not sure where this one came from. I thought all of her discomfort was from her top front teeth trying to come through. I was wrong and now she has 3 teeth.

Caleigh hasn't been sleeping well either. Probably from the teeth issue. Unfortunately, when Caleigh doesn't sleep well, none of use do. I'm exhausted. I hope Caleigh's gums give us a break for a few days or at least the nights.

Feeding has slowed to a crawl. I'm disappointed in the regression. At this point we are just playing with food and holding spoons. I've upped the tube feeds and cut back on eating by mouth. With Caleigh teething, we don't want her to associate the pain with eating by mouth. Feeding has become a battle. So right now we are in a holding pattern. ugh, again.

I've been asked to do an interview over at 5 minutes for special needs. Look for that coming up soon.

I never mentioned it, but the ads that you see to the left of this post are there as potential revenue for Caleigh's blog. So far we've made a little over $20 a month since applying them to the blog. Not a lot, but more than nothing. The money goes straight into Caleigh's account. You can find out more about the BlogHer network by clicking on the links to the left.

A few posts back, I put a link to Benik. This is the company Caleigh's pediatric gloves will be coming from. They spotted that I linked to them and asked if they could put a little blurb about Caleigh and her use of their product on their home page. I said yes. So go take a lookie over on their home page. Make sure you scroll down to the bottom.

Hibernation - Quarintine is getting to me. Tells of RSV and FLU have kept me focused, but honestly I might go crazy. I used to be pretty spontanious pre-Caleigh. It stinks that I can't throw (not literally) Caleigh in the car and run to the grocery store. This is the point during RSV season that parents start to feel ancy and give in to those temptations. I've gotten a little loose with my restrictions lately. I must resist. So for now our outings will stay close to home. Around the block, to the grandparent's house and appointments will have to do for now.

I've made plans to go to the 'What to do about your brain injuried child' lecture in Philadephia. I leave the day after the March for Babies walk in April. It will be the first time I am away from Caleigh. The lecture lasts for 5 days and I have high hopes for learning vital information to help Caleigh achieve many of her goals. I'm sure I will be posting more about this closer to the trip.

My brain has been racing lately. I wake up in the middle of the night with tons of thoughts in my head. I feel like we have beaten Short Bowel Syndrome and with that comes more time and energy to focus on Caleigh's develpmental delays. This leaves my head spinning. I want to beat cerebral palsy and everything that it intels. I need to take one day at a time and stop thinking about the future so much. I need to push myself out of this winter funk.

Tomorrow, Caleigh has her 18 month check up and on Thursday we have an appointment with a new eye doctor to get a second opinion on things. We missed a lot of therapy appointments while Caleigh was sick. So this week and next week we will be craming in as much as possible before the end of the month.

Sorry about the whining. Exhaustion makes me really cranky. I'm off to bed now.

Until next time....

1.5

Today, Caleigh is 18 months old. That's a whopping 1 1/2 years old! What a year and a half it has been. Overcoming and surviving short bowel syndrome is only one of Caleigh's many amazing feats during her short life so far.

At 18 months, Caleigh's smiles and giggles light up our days and bring joy to our lives. That gummy grin is such a true blessing to look at each and every day. Her babbling is more frequent and there seems to be a definite communication between us even though our words aren't the same yet. Caleigh's movements are still stiff, but her coordination and eagerness to achieve independence are very strong. Cognitively, Caleigh is aware. Sensitive and aware. Her vision continues to improve. I'm not sure to what point, but I can tell it is better. Caleigh's eating fairly well. 2-3 of her 5 feeds a day are by mouth. Better than it was 18 months ago and for that we are thankful.

Happy 18 months baby girl!

Terrific Tuesdays

Today sounds like a great day to call terrific.

Caleigh is feeling much better. Her appetite is finally coming back. We've started to decrease tube feedings and up purees again. I couldn't get her to eat anything while she was sick. So we kinda took a few steps backwards because of this. Thankfully she's taken to eating again without too much trouble. Now I just need to get the volume back up to what it was.

I found this great Tray online for Caleigh's Child-Rite seat. It works perfectly and I'm really excited about it. This will give Caleigh a chance to reach forward and out for things. She seems to enjoy her time in the chair and I love that it gives a new outlook for her. This tray is actually marketed towards car seat and stroller use. I plan on trying it out on everything!

You may be wondering about the flashlight... this helps Caleigh see her toys better. Well lit things are easier for her to see than darker items. When we highlight a toy or flashcard she really seems to notice it more.

Thank you to everyone who have already signed up for this year's March for Babies. If you walked with us last year, make sure you are signed up under Team Caleigh. We changed the team name for this year. So make sure all of the information says Team Caleigh.

March for Babies 2009

We're back and this year is going to be really special. Caleigh will be able to join us on our March for Babies. I'm really excited and I want all our family and friends to join us this year. Expect matching shirts, feather boas and lots of fun! I would love a huge turn out!

Here's a link to our team page: ~~~~Team Caleigh~~~~~
You will find all the information about Location, Time, How to register, and How to donate there. The walk actually takes place on April 18th.

Did you know? Team Walk for Caleigh was ranked 5th in Family Teams for 2008! Here's Corrie and I at the appreciation lunch. Corrie was awesome enough to spear head the team last year, since I was a little preoccupied. Thanks Corrie!

I hope everyone can take a minute to read a little bit about the March of Dimes and their efforts to erase Prematurity and Birth Defects. Obviously this is a very sensitive and close subject to our family. I really do look forward to the day babies and their parents are worry free and healthy from day one.

I expect everyone to join us. Why? Because it's going to be a great day! Mainly because Caleigh will be out of the house!! Woohoo! But if you can't walk with the team, I hope you can find some spare change in your couch cushions and throw them our way to support the team.

The Verdict is?

Caleigh had a good night and we made it to the doctor bright and early. One negative RSV test later, Caleigh was given some antibiotics and a diagnosis of common cold & the beginnings of an ear infection all due to teething. Yuck.

Oddly enough she seems to be feeling better today than she did yesterday. So maybe we are on the up swing of things.

I'm happy to announce that Caleigh and I climbed in bed at noon and didn't wake up until 3pm. This was the best nap ever and much needed.

Now I need to go work with miss Caleigh doing therapy stuff. I haven't been the best about it the past few days. Tisk, Tisk, Tisk.

Sickies

It's 5:30 in the afternoon and both Eric and Caleigh are in bed. Eric has some sort of stomach bug and Caleigh is very congested and coughing. Eric has slept all day and Caleigh refused. I called today and made an appointment with our Pediatrician. The minute you mention preemie and RSV they really bend over backwards to work things out. The nurse told me that it wasn't a good idea to come in this afternoon because they are inundated with Flu and Strep. Our appointment is at 8am tomorrow before any other appointments. So a program of benadryl and tylenol will have to do until then. The congestion isn't in her chest, but the cough is getting a little more wet sounding. The risk of RSV is real and I won't be taking any chances. Better safe than sorry.

February is not starting off so great. Maybe we will have a nice calm finish though.

Hoosier

Early Saturday morning Hoosier, our first baby, passed on. He was a little over 8 years old and had been sick for about 3 weeks with stomach tumors. About 3 years ago Hoosier had a heat stroke while out for a walk. After some time in a local puppy ICU he came home. The stroke aged him fast and he just wasn't the same as before.

When Eric and I got married and moved to Florida, a dear friend brought Hoosier to us from Texas. Just a puppy, he went with us to the beach, to the park, everywhere. We would make special outings to the pet store just so we could bring him. Hoosier loved to swim and that is an odd thing for a Boston Terrier. He was also the biggest Boston anyone had seen. Pure muscle in his glory days, Hoosier weighed in at a large 50 lbs. He traveled back and forth from Florida to Texas several times. He sat with me when Eric was out to sea. He was a good dog and quite the protector. Hoosier will be greatly missed.