Starting tonight Caleigh will be off of TPN...again!! We went to our GI doctor yesterday and it was decided that Caleigh is gaining too much weight (1/2lb a week), her tube feeds are progressing wonderfully and her fluid requirements are almost fulfilled with g-button feeds. The TPN has got to go! We initially talked about supplementing the extra 400ml of fluid through Caleigh's g-button daily. Giving her an ounce here and there while her continuous feeds are going 24 hrs. Then we talked about our GI leaving the country for 2 weeks. I didn't want anything happening dehydration wise while he was gone. So I asked for back up IV fluids to have at home and then we all decided that we should just do IV fluids instead of overwhelming Caleigh's guts with too much liquid to soon. So the plan is to do 400ml for 8 hrs a night through the central line and continue to increase tube feeds like we have been doing, 1ml twice a week. My estimates will have Caleigh at full feeds and fluid requirements by June 26th. So a few more weeks of clear IV fluids and then we will start talking about removing the central line. Life will be SO much easier when we aren't mixing TPN. I'm having dreams of summer time swimming and full on tub time! Maybe a road trip less complicated. Who knows what this will open up? I don't think I'm as excited this time around as I was the first time Caleigh stopped TPN. Experience and motherhood leads me to be waiting for the next hurdle, but until that happens we are over the top happy with Caleigh's progress!
This past week has been a rough one for me. Caleigh seems heavy this week. Heavy in weight and heavy in heart. I've always joked about her being a chunky little girl and honestly she hasn't gained her weight overnight. Oddly enough, Caleigh feels heavy to me for the first time. Maybe I'm just feeling weak and overwhelmed. I woke up Monday morning and could barely move. My back hurt so bad. Eric was home so he tended to Caleigh. We loaded up and went to the chiropractor. My back felt tons better after going, but we already go once a week anyways. I'm thinking about starting acupuncture back up soon. Massages don't work for me because I can't relax. Alcohol? Food? What else can I do?
Caleigh had her yearly genetics appointment. We were referred to genetics early on just in case the quad whammy of Caleigh's birth was something that Eric and I passed on to her. I really like our genetics doctor. She is straight forward and down to Earth. The good news out of the appointment is that we don't have to go back to see her unless we want to. Caleigh's Gastroschisis, Prematurity, Short Bowel Syndrome and PVL brain injury were a complete snow ball of unfortunate, non-genetic events.
She brought up the idea of more children from a genetic stand point. This is a fleeting idea in our house. Depending on the time of month, alignment of the sun and the humidity levels outside...ahem. I think about more children often. As Caleigh gets older people start to ask if we will have more. What I do know is that we aren't ready...right now. The logistics of bringing another life into our already crazy schedule is too much for me to comprehend. Eric feels the same. We've also seriously talked about adoption. Every time babies are mentioned I wonder if I could even stomach being pregnant again. Pregnancy was not a fun experience for me. We're young at this point and there is plenty of time to add to our family. In His time.
Things have been moving along wonderfully with Caleigh's continuous feeds. Right now she is at 34ml an hour/24 hrs a day. I estimate that she will be at full feeds in the next 4-5 weeks if all goes well. I've got a call into our GI doc about reducing Caleigh's TPN again. She's gained another half a pound this week. 30.6 lbs. We are very close to getting off of TPN. Very close. I felt like the worst parent in the world this week when Caleigh started having coffee ground type of stools again. Meaning blood in her stool. Eric and I couldn't figure it out. We were close to taking her in to the doc when we discovered the culprit. About 2 weeks ago I ordered Caleigh's probiotics because we were running low. When it didn't come in I contacted the company and they told me it was back ordered. No problem, I thought. I told Eric to run down to Walgreens and pick up some Culturel. This was the first probiotic that Caleigh ever took and it worked for a long time. After 3-4 days on the Culturel, blood in her stool and not sleeping well; we decided to skip a night of Culturel to see if it made a difference in Caleigh's sleep. Caleigh fell asleep quickly, I sat on the couch and Eric and I started going through the what ifs and whys and then it hit me like a ton of bricks. I jumped up, ran to Caleigh's fridge and pulled out the box. In bold black with asterisks it read "this product contains milk proteins." Ugh. Worst mom of the year award....right here. I didn't even think about it, my goodness. We didn't give her anymore obviously. A terrible part of the whole ordeal is that Caleigh had been telling us on her iPad that she felt sad. I thought it was her new favorite saying. Turns out she didn't feel good. Caleigh's stool is back to normal and she's sleeping through the night again. She hasn't told us that she is sad anymore either. Just a reminder that I need to pay attention to ALL labels no matter what we are using them for.
Speaking of the iPad, Caleigh is doing amazing things with it. She's excited to use it. She is getting her point across. The best purchase EVER. I made a keyguard out of glue sticks (still waiting on that plastics patent) and it has helped a lot. I don't have to hold Caleigh's elbow anymore. I had moved the choices to 8 squares back before the 3 inch growth spurt. She was doing great with the smaller squares. Caleigh's dystonia was a little out of control so I went back to the 4 larger squares to avoid frustration and she's doing well with it. Caleigh has also figured out that if she accidentally chooses something that she didn't want, she can hit the home button to return to the main choices. I didn't teach her that, but I guess she picked up on me doing it for her.
This video is of the iPad with 8 squares. This was right before I switched back to the 4 squares. She makes a choice that she didn't want and then chooses the home button to start over. Caleigh has been asking for a drink a lot more. Maybe a drink on her terms is much better than a drink on mommy's terms? Caleigh's verbalizations have really picked up since she started using the pad. You can hear her try to say drink before she chooses it.
Last week we received a loaner Kidwalk gait trainer. You may remember that we also have a Pony. We've had the Kidwalk for a couple of days now and I'm already sold on the walking capabilities of it compared to the Pony. We only have this for a week and then we will order one just for Caleigh. Caleigh actually picks her feet up and steps in the Kidwalk which doesn't happen with the Pony. Did you get that? Caleigh is taking steps......
This video is from the first day. Since then Caleigh isn't trying to eat the headrest as much and we have moved her to the patio outside. She's doing great so far.
Caleigh's friend Kendall is also trialing the Kidwalk so we decided to get them together this weekend for a little playdate. This photo makes me smile for many reasons, but mostly because Caleigh has a friend so much like her. I'm so thankful for our friendship.
The bath chair has been mentioned pretty much since we brought Caleigh home from the NICU. I've refused the chair on several occasions. Since January and the return of the central line Caleigh's bath time has become a bit of a challenge.
I usually lay her flat on the bottom of the tub laying in the water. Caleigh can kick and splash this way. With the central line and Caleigh's rolling movement it's hard to keep her chest dry. We use press and seal to cover her central line dressing, but it's not a fool proof plan.
So this time around I actually brought up the idea of a bath chair. I gave in. About a month ago I did some research and decided on the Rifton Blue Wave Bath Chair. It was the lowest sitting tub chair that I could find. It also can be adjusted to sit up high and came with a tub base for the future that makes the chair even higher up. So far it is ok. I've had a good routine with bath time so this is just going to take some time to get used to it. Caleigh doesn't seem to mind the change either way.
The bath chair brings to mind the larger picture. Caleigh is getting to be a big girl. 30lbs and 36 inches long and still growing. On a good day I might appear to be 5'1' but usually I'm just a plain 5 foot tall. How on earth will I carry and lift Caleigh when she gets to be say.. 60lbs.? It's hard for me to think about it. It's hard to comprehend. Yes there are tracks that you can put in your house. There are bed lifts. Van lifts. There are days spent in a wheelchair, but I haven't given up on Caleigh's ability to move independently. Until that day comes I just don't think I can fully wrap my brain around lifting my big girl forever. When I've had a hard day and my body is tired I have a difficult time thinking about the possibilities. I just continue to pray we don't have too.
3 inches. That's how much Caleigh has grown in the last month. I swear I woke up on Monday, and not a moment before, to a kid that was 36 inches long. Last week Caleigh started sleeping really well. Naps were a breeze and night time was wonderful except for diaper changes. We were ecstatic.
It's crazy how being back on TPN and getting the vitamins and nutrition that she needs can cause such a growth spurt. First the mouth full of teeth, then the luscious curly locks and now 3 inches. It's really been a wonderful thing.
Today the tech from our DME company came out to adjust all of Caleigh's equipment. When we sat down to measure Caleigh I was flabbergasted over the growth. 3 weeks ago at the GI clinic Caleigh was 33 inches. No wonder NOTHING has been working. Yesterday, I put Caleigh in the pony gait trainer and had to adjust it a few inches. We haven't been able to keep Caleigh's head in place in her stander, and the wheelchair has been a total mess. I've secretly been using our trusty umbrella stroller instead of the wheelchair because it's just a constant re-positioning battle. Plus the umbrella stroller weighs tons less. Just the other day I pulled into Target...parked...thought about getting out and then decided it was just easier to go home. So after the stander grew a few inches and the wheelchair was adjusted Caleigh was all set. Everything looked great and after a trip to the store this afternoon I can say that the wheelchair fits so much better.
Caleigh's little growth spurt has caused some issues as well. Her recently acquired control over her dystonic muscles has flown out the window. She is arching more, flinging her arms more, and generally more "excited" than she was before. This has made Caleigh and mommy more frustrated. So we've been working on more weight bearing to try to get her muscles caught up with the growth.
1 step forward 2 steps back. Always.
The tech also delivered Caleigh's first bath chair and a loaner KidWalk gait trainer to try. More on those next......
Being a photographer has it's perks, but at times you just want a family photo...a good family photo.....with you {the photographer} actually in the photo.
At this point Eric won't look at me if I have a camera in my hand, the dog won't look at me and I really have to sneak a pic of miss prissy pants if I want one.
When my friend Adrien offered up her photo services I jumped at the chance. I'm so pleased with how they turned out. She really caught Caleigh's smiles and even her serious side. I think Eric might have cracked a smile too....Enjoy the slide show and don't forget to check out Adrien's website where Caleigh is a star player in her gallery section. Oh, and if you want to see something super amazing check out the gallery Birth Day! on her website. It's sure to be a tear event!
On Saturday morning I woke up with a huge urge to get in the car and go. I wanted to be outside and I wanted to take Caleigh somewhere she has never been before. Before Caleigh was born Eric and I would get in the car and drive hours. We love hiking, camping and being in the quiet outdoors. We were always outside doing something when we lived in Florida. Things slowed down a bit when we moved back to Texas, but we would still have our little get aways.
I miss that SO much.
Eric and I have contemplated taking Caleigh camping on numerous occasions, but we just can't seem to wrap our minds around it. How would we mix her TPN? How would we hike with her? Where would she sleep? Would she be too hot? What if something happened? It seems like an overnighter isn't in our future unless it involves a refrigerator, hotel, RV or high end cabin.
So we got dressed, packed everything we could think of and headed about an hour south to the Dinosaur Valley State Park. We have a State Parks pass so this was a sure bet without spending a fortune. I hadn't been to Dinosaur Valley since I was a kiddo and I really didn't remember much of it. All I knew was that there was supposed to be dinosaur tracks that had been preserved. We got there, didn't see a single dino track and had a great time. There were several trails that all led to the river. Most of the dinosaur tracks were on the other side of the river and since we had Caleigh we decided not to cross the water, but there was plenty of hiking and walking to be done. Turns out the park is a little too touristy for my liking, but we did find an equestrian trail that no one was on and that ended up being a really nice time. It was great to get away from everything for a day.
Mother's Day was spent at Caleigh's grandparent's. We visited and then made it home in time for all of us to sleep. We were exhausted from our go go go weekend.
Caleigh's week ahead is pretty relaxed. No doctors appointments. Just lots of therapy. Our Normal.
Last week Caleigh tried the iPad at our OT clinic using the Kindergarten.com apps. These were free in the month of April. So earlier this month I downloaded a few of them that I thought Caleigh could use for my iPhone. I've been showing Caleigh the flash cards and basically showing her things she had never seen before. An example would be a saxophone. Nope, we don't have one laying around the house.
As soon as we put the iPad in front of her she was swiping pages and showing us that she is quite the smart cookie. Caleigh's used to playing on the iPhone, but she really took to the larger screen. The sensitivity of the touch screen was nice and we started using 3-4 options on the screen instead of the one option flash card. A pleasant woman's voice asks Caleigh to show her the saxophone. She did it. Reached all the way across mid-line with her right hand and tapped away. We didn't keep count during the little iPad session, but we estimate that we showed Caleigh 40ish choice pages and she chose incorrectly 5-8 times. Caleigh's been paying attention. A lot. So incredibly smart.
I got excited. REALLY excited.
I made a call to our DARS lady (vision services) and asked about funding an iPad for Caleigh. We've been talking off and on about a communication device for probably 2 months now. She was just waiting on me to call with the device we chose. She said that they probably could help us out. So she scheduled a visit at our house, our OT came out and did an amazing job of selling the product for Caleigh's use. Afterall, we're talking about $800-$1000 here. If we can have help with that, it would be amazing.
As soon as our OT left, the DARS lady gave me the "well here's the bad news." "It's technology and we can't help pay for that." "There are resources through school, when Caleigh starts, the school would have to pay for one."
Yeah, Right.
I was really disappointed in the entire visit. Angry actually. She should have walked into our house and told us up front instead of waiting for the sells pitch to be over. What a waste of a therapy session. Plus she's known about us wanting a communication device of some sort for months now. She could have made the call then. Ugh.
I felt like this lady, who actually happens to be blind herself, was sitting there telling me that Caleigh wouldn't be able to communicate. I felt like a 5 year old, throwing a fit because my parents told me NO. Nobody tells me no as far as Caleigh goes. If she needs something, she gets it. Who cares if they aren't going to pay for it, who cares if we have to pay for it. Caleigh can express so much through a device like this. Who cares.
So after I picked myself up off the floor, kicking and screaming of course. I decided that we would go and get Caleigh her very own iPad.
A few hours later I felt entirely guilty for what seems like rushing into a decision. Although it really wasn't. I've been researching devices for Caleigh's communication for months now. We've tried 6. I've done my homework. If this was a special needs device that was within monetary reach I wouldn't question myself one bit. The fact that the iPad is some cultural phenomenon is what makes it feel wrong. Buying the iPad makes me feel like I just went out and bought my 16 year old a brand new BMW. It feels wrong, but it's not. The reasons for purchasing the ipad have nothing to do with the phenomenon.
With everything we know about other devices; here's a list of why I think the iPad is the best choice for Caleigh right now.
-Portability. This won me over. The other devices are too bulky & heavy and with Caleigh not sitting in a wheelchair all day the only choice was something we can carry around with ease. I have to carry it...along with my 30 pound daughter. I got a little taste of this with the PRC device that we had on loan. It makes carrying Caleigh even harder. The only option I was given was a wheelchair mount. -Apps. The educational possibilities are endless. Fine motor skills, books, movies, music. Communication with the app Proloquo2Go is the big seller. I'm loving the customization. I had already downloaded the manual and read through it 3 times. OCD...yes. You can watch a video about it here.
-Lack of fight. Yep, I'm throwing in the towel. Caleigh turns 3 in August and I don't want her voice to wait until then. In Texas the school district is required to buy a communication device, but it takes time...tons of time and meetings. I'm pretty sure they would laugh at me if I told them we wanted the iPad for Caleigh. When it comes to patience and waiting for essential things for Caleigh, I just don't have it lately. There's that 5 year old again....I want it for her and I want it now.
-Cost. We could buy a new iPad + accessories once a year for the $1100 cost of extending the yearly warranty on other devices. Insurance/Medicaid pays for a device once every 5 years and not a minute before. The warranty isn't covered. The overall cost to us would be cheaper in the long run to outright buy an iPad with the $99 two year apple care.
-Age. Caleigh is almost 3 years old. It's a fairly new practice to give kids like Caleigh a high tech communication device. In the past you just waited it out and used photos and objects. There are tons of 3 year olds out there with delayed speech. Caleigh's not the only one not talking yet. She could wake up on her 4th birthday talking up a storm. We still have great hope that Caleigh will one day talk to us with her own voice. I think the iPad is a good starting point for the just in case she does scenario.
-Time. This goes with my lack of fight. Drive to the apple store and pick one up. Get home and download Proloquo2Go and your set. No months of waiting. No forms to fill out. No qualifications. No rental agreements. No approvals. No representatives. It's done and ready to go in 1 day.
So we made our decision. An iPad it is. For now.
After my 5 year old self made a validating phone call to Caleigh's Mimi; it was decided that we would meet at the Apple store the next day. Although I'm pretty sure Mimi has a soft spot for her Caleigh and it was no question whether she needed an iPad or not.
We showed up, purchased, came home and downloaded the app Proloquo2Go. By the next day Caleigh was flying through the first set I made her.
Here's the choice that she made in the above video: Each day she has gotten better and better. You can tell in the video that I have been holding her arm up at the elbow. This helps with Caleigh's endurance. I also let her do it on her own. With her movements it kinda looks like I'm moving her arm. Nope, not the case. All our girl.
I'm still dreaming up a keyguard though. Anyone out there know how to develop, sell and distribute a plastic product? I've got the plans in my head.......
I've been adding new buttons each day. Caleigh smiles when she tells us something and she still gets excited when I bring out the pad. We started doing pretend play recently so I am trying to incorporate that into the device as well. I've added feelings and yes/no, hi/bye, all new to Caleigh's choices. She's picked up on them perfectly.
Let me say that I really like the PRC language system, Unity. I like the fact that each button has it's place and that is where it stays. After working with the Proloquo2go system, I can understand how setting up pages could get confusing. I'm still keeping an open mind. As Caleigh's fine motor skills develop, and so does PRC, we may be able to transition to a PRC device at a later time.
As far as the DynaVox goes, well, the iPad blows it out of the water as far as I'm concerned.
I'm excited about our decision. I think it will take Caleigh to the next level.
Our intelligent, bright & brilliant girl. We'll just have to see what the future holds.
Have I mentioned that I have been doing more photography lately? Ever since I wrote my 2010 To Do List, quite a bit has changed. Our straight and narrow path ended up curving slightly. Caleigh got back on IV nutrition and we have been in and out of the hospital since then.
Just in the last month have I really been able to start working on that list. It's only May and I think I'm doing pretty darn good so far.
Number 17 on the list was to get back into photography and I'm doing just that. One session at a time.
Check out my website and definitely let me know if you want a photo session. Plus, all proceeds go to Number 16 on my list, therapy for Caleigh.....
After checking out the recalled medicine list, we discovered that Eric and I had been giving Caleigh recalled Dye Free Tylenol during her 4 day fever two weeks ago and occasionally here and there before that. The bottle is almost empty. We have a brand new unopened box as well. It's been recalled too.
Caleigh's Zyrtec is an off brand so we might be good there.
The recall is for inactive ingredients that were not tested for internal use and for active ingredients not having the right concentration.
What's a parent to do? Two weeks ago I never even thought to question the concentration of Caleigh's Tylenol. How can we possibly trust what we are giving our kids on a daily basis?
