List of Updates

Things have been a little rocky since we stopped Caleigh's IV fluids last week. Not to mention the amount of blood that was drawn last Tuesday really made things worse. Caleigh was pale and just generally not right for days. Her sleep schedule has been off and she's been fussy.

She's doing okay with her fluids. Not getting dehydrated. She's actually working the opposite end of the rope. Everyday she tends to be about 400ml positive in her output. The consensus is that her body is trying to get used to the changes, but we will probably be doing more blood work soon to check her kidneys. Typically your output should be fairly close to your input.

All of the lab work that we did last week came back fine except for the clotting times. Caleigh is now on a vitamin K supplement. We'll check her levels again soon.

We've also added a milled flaxseed supplement to the daily routine. So far it is making Caleigh's stool have more consistency. She's only stooling about 3-5 times a day right now, but the quality isn't always liquid.

We recently took Caleigh to the dentist to have her teeth cleaned. This was a 3 visit situation. Once a week we would show up and they would clean a little bit more. Caleigh did amazingly well. She didn't gag or retch once. She's all set until October.

Caleigh's eyes have really been crossed more just in this last week or so. You can tell in the photos. We've been patching, but somethings off. Maybe it has to do with blood draw and fluid changes. She is also holding her head down and to the right a lot more. Is it that she can see better with her head down (like tunnel vision) or is it a habit she has learned? When we ask her to hold her head up straight she will and she can. So is it more comfy to hang her head down? Our next eye exam is at the end of July. I think I'm going to start calling and bugging for cancellations.

Our helper/nanny has been with us now going on 4 weeks. We absolutely love her. Caleigh loves her. She treats Caleigh like a normal kiddo. Their conversations are wonderful to overhear. Caleigh lights up when she talks to her. She's really caught on to the routine. It's a good fit. I've only left the house 3 times so far, but hanging out in the other room, working on photography stuff and best of all taking a shower is SO nice.

Eric and I got to go out for an afternoon on Saturday. We ate sushi {our fav} and then we went to see the movie Grown Ups. We did a little shopping in between. All for Caleigh of course! All in all, we were gone for 4.5 hours. We made it home just in time to put little miss down to bed. It was nice to have that distance even if we were only 20 minutes away at all times.

I've been very scattered brained lately. I haven't returned emails and calls like I should. I catch myself spending way too much time on one un-important thing. For instance the blog re-design. It took a few hours tonight and I'm not even sure I like it, but for some reason I got stuck obsessing over it. I get stuck researching---look up and it's been an hour.

I think Caleigh's upcoming ARD meeting is getting to me. I've even researched some about homeschooling. I need to chill out and give the school district a chance. Geesh, we haven't even had the meeting and I'm already thinking about pulling her!

All of the go go going is getting to me. All of the therapies are getting to me. The schedule is just nuts. How are we supposed to add school to the routine? Some days I feel like a mom. Most days I feel like a corporate therapy secretary wearing pajamas.

Full Feeds

Caleigh is officially at full feeds. That is 45mls an hour for 24 hours a day. That equals up to 1080mls of Elecare, which is 36.5 ounces a day. Non-stop. Always hooked up to a tube. Backpack toting and tube tangling 24 hours a day.

That said, Caleigh has been TPN free for 26 days and has done amazingly well.

So as of tonight Caleigh is done using her central line for fluids. Up until now we have been doing 400mls of normal saline through her line for added fluid. Tonight we are done.

This afternoon we drew 6 vials of labs. The regular stuff and then some to check on vitamins and minerals. The results should be back by the end of the week. I had our GI add the extras just in case we don't have a central line much longer.

We added a vitamin K supplement today because Caleigh's clotting factors are too slow. Basically, she could bleed easily and have trouble stopping. She had been getting the vitamin K in her TPN. So since we stopped the TPN she hasn't been getting it. Caleigh's body hasn't picked up the responsibility yet. Just a little deficiency we can thank short bowel syndrome for.

So we wait, watch closely for changes in her output and pray this is the end of the central line. I can't get my hopes up too high, but who knows?

We go to see the GI doctor next week. I'm sure we'll set up more of a plan at that time. Maybe there will be swimming for Caleigh this summer. Maybe.

Journey to Pre-School Part 1

Today, I took Caleigh to an evaluation for pre-school or PPCD as it's called. Eric was working, but was able to take a few hours off to be there. This meeting was to prove that Caleigh needs special education services at a pre-school level.

So we showed up and met with a diagnostician, speech therapist, our vision therapist & operations & mobility specialist. They had a series of questions and really just observed and listened to my stories. We sat at a table and I held Caleigh. They gave her some stacking rings which she tried to pick up with her fingers, but got bored pretty quick. Then they gave her a red ball with white spots and Caleigh pushed it away. Then they handed her a small baby doll and she immediately grabbed it and gave it kisses. The diagnostician said "of course she didn't like the other toys, those were boy toys." Caleigh's love for baby dolls started last week while we were reading a new book, or at least that's when I noticed it. She also loves it when Elmo "asks a baby" during our morning Sesame Street viewing.

So they asked the standard speech questions and then we pulled out the iPad. Caleigh first asked for a drink and then asked me to give her kisses. Then we did some of the kindergarten flash cards. They were all super impressed. I was proud.

The diagnostician finished up with a few more questions like: does she follow directions? does she know what No means? How is her hearing? When she was done she said that the actual scoring or number that they assign Caleigh will probably be low because of her physical limitations but then she said "it's obvious that Caleigh is cognitively age appropriate but is unable to vocalize." She said that same statement 3 times during our meeting. She talked about doing an IQ test in a few years and was excited that they would be able to do that. Right now Caleigh is too young.

Caleigh followed my directions during the meeting, she stopped fussing when I asked her to, she answered questions on the iPad, she picked out the dog on a puzzle they showed her, she played with the baby doll, and she gave lots of kisses. She was an intelligent princess throughout the whole thing.

So the plan is that they will finish up their report and recommendations for Caleigh. She will be recommended for pre-school based on her speech delay. Our ARD meeting is scheduled for July 23rd. I've got a lot of reading and research to do so that we can be ready for it.

We left the meeting feeling proud that someone...a professional, agreed with our thoughts about Caleigh's cognitive abilities.

Before we went in for the meeting I had promised Caleigh a new toy if she did good and didn't fuss. Bribery and reasoning is something new that I've only been using a couple of weeks and amazingly it works. Whether it's music or an object it works. So we headed to Target after the meeting and Caleigh chose her first baby doll. She's been loving it all afternoon.

Today was a good day and a good start to our school journey.

When my Baby was Yellow

Here Caleigh is at 4 months and 5 days old. Her liver numbers were beyond high at this point. I believe her bili was 13. She was such a sick baby. Her skin was yellow, her eyes were yellow. I loved the outfit in this photo, but everyone told me it made her skin look so bad. Well, yeah, it was bad. Mustard green on a yellow baby is definitely a fashion fopa.

I love this photo though. It's one of the few pictures that I have from the NICU that actually has Caleigh looking into the camera. At this time, Caleigh was having complex partial seizures. We didn't know. So she was either crying, or sleeping. Same goes for my state of mind during that time.

When this picture was taken, Caleigh hadn't smiled, or made so much as a coo. She was so incredibly sick that the day to day task was surviving and planning on the next step to save her life. That's what our NICU journey was...a marathon to save Caleigh's life.

A couple of things led me to post this photograph of Caleigh. One being that I bought a wonderful frame for our living room and I started going through old photos to pick out which ones I wanted in it. Another reason for going through the old photos is that I've been asked to speak to a group of incoming NICU nurses and give them my perspective from a parent point of view. Along with that, I'm also doing a story board of sorts to hang in the NICU with Caleigh's journey and some photos.

Going back through the old photographs and thinking about our trek as a family of three has really stirred things up emotionally for me. From some of the first few days after Caleigh was born and seeing her belly button; imagining what her belly would look like now if she hadn't had 8 more surgeries. To looking back to each holiday that we missed out on. There's the photo of Santa visiting Caleigh while she was recovering from surgery. She was bloated, red and on an high frequency vent struggling to breathe. There are sweet pictures of Eric holding Caleigh and staring at her tiny face. Watching through the pictures the infamous "rollercoaster" that we were on every single day for 6 and a half months. In one photo Caleigh would look ok, wearing a cute outfit and snuggling on our chest and then the next photo would be her on a ventilator, no clothes, belly distended, red and hard. Looking back, took me back and quite honestly it's been hard.

I believe that I have taken the memories of that first year and stored them away in my mommy brain. Those bits of memory like to pop up when I am least expecting them. They don't even have the audacity to call ahead....

What a crazy week

Wow, this week has just been plain nuts and it's not over yet!

Monday our helper started and she's great so far. Caleigh likes her and quite honestly she treats Caleigh like a regular kid. That makes me happy. I'm still teaching her the routine but she's catching on quickly. She's in the other room playing with Caleigh as I type. I don't even feel guilty, which to me, means we have a good fit.

Tuesday we drew Caleigh's labs and her electrolytes look great. This means that she is wonderfully hydrated and balanced. Caleigh's clotting factors are elevated which means she may bleed more easily than normal. We will re-draw those labs this coming Tuesday to keep an eye on it.

Wednesday we were super busy. Caleigh had music therapy in the morning. Where we discovered she knows her animal sounds. Pig, Cow, Duck to be more specific. Then I took her to the dentist to discuss cleaning her teeth. We made an appointment for this coming Monday to have them cleaned in the office. No sedation or anesthesia required. Then we came home and I laid Caleigh down for a nap. One hour later we were in the car headed for a new speech evaluation. Our old speech place hired a new person that deals with augmentative communication. So we went and Caleigh showed off for her. Now we have a set appointment every Wednesday. I'm not sure what we will get out of it. The aac lady doesn't know the iPad or Proloquo2Go so I don't want it turning into me teaching her. That's not what were paying for. Caleigh's doing so well using the iPad, I'm not sure where to go from here, but I'm sure there is something else to do. I'm willing to try it.

Thursday Eric and I took Caleigh to The Retina Foundation for some vision testing. I have no clue what we did, but we will have the report in 3 weeks. There was cardboard and a lot of stripes involved so I'm interested in seeing what they conclude.

Today we had OT and PT and our helper has been with us all day. It's nice to be able to stay home for all the therapies at least one day a week.

Tomorrow we have 2 birthday parties. So tonight is all about resting up!

iPad + Proloquo2Go, 1 Month Update

It's been one month since Caleigh started using the iPad. It's been even more amazing for her than I could have imagined. She's a happier kid. Her tendency to scream and cry when she wants a transition are all but gone now.

A couple of weeks back we were at OT. Caleigh was using her iPad and asking for her stuffed dog Violet (her fave). She played with her for a minute. We sat Violet down and moved on to the next activity. Caleigh loudly said "Caaa." The OT looked at me, I looked at her. We started thinking of 'ca' words. I decided she was trying to say 'car.' We get the iPad back in front of Caleigh and ask her "Caleigh were you trying to say car?" Caleigh tells us "no" using Proloquo2Go. And then it hits me...Violet is a Leap Frog toy that can be programmed with your child's name. It says Caleigh (even pronounces it correctly) and sings songs using her name. So we ask her "were you saying your name, Caleigh, like Violet does?" She moves her way to the yes button and chooses it. I started crying. Literally. It felt like a break through.

About 6 months ago I had a speech therapist tell me that yes/no questions were too advanced for Caleigh. I don't think so.

We had the screen set on 4 big square choices and last week I got the bright idea to change the set up. I made the squares smaller. It comes out to 10 squares on the screen. I left most of them blank and continued with the choices that were on the 4 squares. We used the device that way for about 4 days when I realized Caleigh's enthusiasm for the the iPad was dwindling. So we sat down and I asked her if she wanted me to change back to the 4 large squares. She chose "yes." I asked her if the smaller squares were harder for her to use. She chose "yes." That afternoon I moved it back to the 4 squares and Caleigh has been interested and doing well again.

Here's a video of Caleigh telling me many things. She occasionally makes an accidental choice but immediately goes back and tries again until she gets what she wants. Usually she just tells me one thing at a time so this is something new. At the end of the video you can see that she says "I want to stop." That's her way of telling me that she is done talking.


It's come to my attention that Caleigh's YouTube videos with her using Proloquo2Go on the iPad (which we are now calling Caleigh's Talker) are just about the only ones out there. Especially for a kiddo with Cerebral Palsy.

I get emails everyday asking questions. I've talked to several moms all across the country. It's funny to me because I just did it. I went out, got an iPad and started using it with Caleigh. I have NO formal speech training and definitely NO augmentative communication training. I'm an Art chick. I'm pretty sure I took the leap of faith because I didn't have a speech therapist whispering in my ear about what they believe are Caleigh's abilities and what they will be in the future. Since January we have been without speech therapy. During that time we trialed several devices. I made a couple of my own systems and in the end decided on the iPad. So I'm not an expert, just a mom. I know what works for Caleigh and that's it. To be completely honest, Caleigh is the one that has made it easy. She's smart and picked up on it immediately. If that wasn't the case, I'm not sure I would be bragging so much. I'm glad that Caleigh's progress can help so many kiddos like her.

The comments are open below this post. If you have any questions about the iPad and what we are doing with Caleigh please ask away. I'll compile them in a future post if I get enough.

2nd Year Slideshow

Remember way back when I said that I was working on a slideshow for Caleigh's second year? Probably not huh? It's almost been a year since I wrote that. I guess time slipped away from me. It's not like we were busy or anything.

So here it is only 2 months shy of Caleigh's 3rd B-day, but nonetheless it's done. Makes me all sentimental and teary eyed.
Our baby really is growing up so fast.

In case you missed Caleigh's 1st year slide show you can click below.

Click to Watch Caleigh's First Year
Hope you enjoy!

6 Days + Help

Today marks 6 days since Caleigh stopped TPN cold turkey. The normal saline fluid at night is working out well. Caleigh hasn't been sleeping very well since stopping the TPN though. My theory is that she is hungry and used to getting a lot of calories while she sleeps. Hopefully she will adjust to the new situation soon.

Yesterday we made our way to the DME showroom to try out power wheelchairs again. It's been almost a year since Caleigh tried the powerchair and so much has changed since then. Our appointment was at 1pm. Caleigh's nap is at 2pm. Remember she hasn't been sleeping well at night....

It was a mess. Caleigh was having no part of it. Everytime someone would take her hand to show her the joystick she would pull away. Caleigh's head position was just terrible. She was crying. I had her music blaring from my phone. The lady (who isn't our normal gal) wasn't taking our advice on the position of the joystick. It was basically out of reach. She started talking about numerous switches on a tray to make the chair go. So after a bit of problem solving I suggested we start all over on another day. Another day NOT so close to nap time and TPN wean. We made the appointment a month from now with our regular lady who will be back from maturnity leave by then and we also made the appointment at our house. Caleigh fell asleep on Eric's shoulder and then we left. Now just isn't the time. Needless to say I didn't take any pictures. We drove away feeling defeated. It was just one of those days.

Yesterday was also the day that I hired our first helper. I've been interviewing several people for awhile now. I started a few months ago and after going through several interviews I finally decided that I just need a regular run of the mill college student to help with Caleigh. Someone with energy. Maybe 20 hours a week. Turns out my pick has experience with g-buttons and CP. So Monday will be our girl's first day.Wish us luck! I'm hoping this is what we have been looking for.