Weekly Update

This week has been super busy. It seems like the warmer the weather gets the more that we have to do. That's ok, I'll take it!

This week medically Caleigh has progressed really well. We discussed the oozy central line with our surgeon and he believes that instead of a healing slow issue, Caleigh's body is trying to reject the central line. So that is causing the drainage, and the smelly green yucky stuff. So we started applying a pressure dressing to hold the line more secure and to see if that will help with the drainage. Leave it to Caleigh's body to reject a very important part of her nutrition. This girl Hates to eat in any form!

On Wednesday we went to the GI doctor and he is excited with Caleigh's feeds. We've decided to hold off on the antibiotics for bacterial overgrowth until symptoms come back. Right now we are doing 10 days on the antibiotic and 10 days off. Caleigh may only need it once a month so we're going to see how it goes.

Caleigh's g-button feeds are up to 28ml an hour. Full feeds are somewhere around 42-45ml an hour. So she's getting close. With Caleigh's feeds going up so well it was decided to cut Caleigh's TPN from 12 hours to 8 hours. Tonight will be the first night on that schedule. That will probably help with the massive night time wetting. Caleigh's been getting too much fluid at night with her TPN going.

I did take a lot of everyone's advice on the bed set up. I picked up some washable bed pads and they have been great so far. I also put a kotex in Caleigh's diaper and that helps quite a bit. We will also be getting diaper doublers sometime this month which will basically do the same thing. Caleigh's been sleeping better. Bed or incontinence supplies, she's sleeping better.

I've still been changing her diaper 3 times a night due to a nasty rash. Caleigh hasn't had a rash this bad in over a year so we've gone back to our old methods to try to make it better. It may be the antihistamine/decongestant that we started her on for allergies causing the rash. That's really the only 'new' thing added. Caleigh's laying next to me right now, bare tooshy and all, airing things out. Hopefully it will heal up sooner than later.

When we were at the GI doctor, Eric and I discussed the idea of Caleigh going to school in August. We really didn't show him our feelings, but really just put it out there for his thoughts. He talked through the risks and decided that Caleigh is at a fragile spot right now. Trying to get her off of TPN and having a central line is just too much for a school setting. With Caleigh being so isolated it would most likely not be a good situation. We can't have her picking everything up and suffering a big set back. He promised us anything we needed to get her set up at home.

So there we go. Our answer to the school decision. So now I need to find out exactly what I can fight for from the school district based on home bound education. Always a new adventure.

Caleigh's Communication Part 3

Last week the DynaVox representative came to our house. She brought a couple of devices with her and Caleigh did SO well with it. Holy Cow she did good!
DynaVox seems to be more user customizable then the PRC devices that we have tried. Even down to the length of time Caleigh has to touch the choice. So instead of the device saying "I want I want I want I want" while Caleigh takes the time to pick up her fingers; we can program the device with a time limit and it will only say "I want" once.

The screen brightness lowers much better. The PRC device seemed too bright for Caleigh's eyes. The DynaVox goes darker.

The screen is easier to touch and Caleigh doesn't have to try so hard to push the right choice.

Once a choice is made the screen moves to a second area which allows another choice. This prevents accidental choices which we were seeing with the other device.

I can even take a photograph of Caleigh's play room {or any room}, import it into the device and label the different things in the room. Then Caleigh could just simply touch what she wants in the room and it would say what it is.

The language system can be anything that we want. If we want Caleigh to touch individual buttons for "I" "Need" "Diaper" than we can. If I want her to be able to hit a phrase button that says "I need my diaper changed" than we can do that too. We decide button placement and meaning. This is a good thing for us. I really like the language system that PRC has. It seems to teach the words not just hitting a button that says a sentence for you.

I had a proud mama moment when I was telling Caleigh what the buttons meant. She wasn't picking anything and we could tell she was done playing. The rep added the "all done" button, handed the device back to me and I pointed to the button and told Caleigh that "all done" meant that she was finished playing and then we could do something else. She immediately reached up and touched the button....then smiled.

So I'm excited about it. It's more computer like. Less stuck in the stone age.

Now here's some annoying things....
you know there had to be some....

DynaVox doesn't just loan out their devices to try at home. You have to apply for a 30 day trial rental which insurance/medicaid pays for. The stipulation to this is that they start doing the paperwork to purchase while you are doing your trial. I understand they are trying to get the ball rolling, but give us a chance to try it out first.

Purchase price is close to $8000 and can go up depending on options that you buy. We can most likely get insurance/medicaid to purchase a system for Caleigh. The only issue is that you can only get a device funded every 5 years. This is just ridiculous. Think of regular computer and cell phone technology. By the time you buy an electronic device and take it home the company has already come out with something bigger and better. So they expect our kiddos to use a device for 5 years! Not cool.

Another issue I have is that it is a total Windows based system. It's a touch screen Windows computer basically. This means that you can get viruses and all the other wonderful Microsoft based yuckies. When I saw that grassy field with the blue sky I cringed. We run a total Mac household over here. So I'm totally biased. Adding this device would mean that I would have to buy some expensive software so that I can edit pages on the computer. It's complicated and I don't have time for it.

The device has a 1 year warranty included. PRC has a 2 year warranty. After that you have to buy the extended warranty, unless you love to live on the wild side, and that will cost us $1100 bucks a year. So in the 5 years that we would own the device...that's $4400 in warranty money by the time we are done with the box.

Even though there are issues with the DynaVox, the system worked much better for Caleigh physically. It's definitely ahead in the race.

Next on the list of devices to try is the iPad running Proloque2Go. This may or may not work because Caleigh needs to use a keyguard to make her choices. We'll just have to see how sensitive the iPad is.

Bedroom Makeover

Eric and I recently bought Caleigh a new twin size mattress. For about the last 4 months or so, Caleigh has been waking up throughout the night with a blood curdling scream. I would run into her room to find her legs sticking through the crib rails or better yet, to find her wiggled all the way to the head of the bed with no where else to go. Our baby girl is just getting too big.

The current crib does turn into a toddler bed, but that doesn't change the length or width so we would be in the same predicament.

I'm pretty sure I researched the best long term solution for 3 months, and finally, I think, we came up with a great plan. There are companies that make 'medical' type of beds. Most look like cages from the zoo and they most likely would have been paid for through insurance. There are regular beds, but we had to think about railing and the risk of Caleigh falling out of the bed. In the end, we decided to piece together the perfect ensemble ourselves.

Last weekend when Caleigh had her fever, Eric and I decided to paint Caleigh's room. After all, she felt fine, and all we were doing was waiting on the call to head back to the hospital. Why just sit around and wait? With the help of Mimi & Pop....and Caleigh, we got it all done. The color is tailored linen. It's a light yellow. I think I was expecting a little bit darker of a yellow tone but it turned out really pretty.

So the room was painted. Caleigh wasn't in the hospital. When her fever broke on Tuesday we headed to Ikea to make the bed purchase. Caleigh did wonderful with all the shopping. We got there when they opened and there really wasn't anyone around. It was perfect. We bought the bed and headed home to do Caleigh's labs.

Later that afternoon, we added a new ceiling fan, since I totally broke the old one, and then added new safety outlets. Then we started putting together the bed. We've bought dressers and other small things from Ikea before, but you've really never had a good time until you've put a whole bed together! Hours of enjoyment. Geesh, there was pieces everywhere....

At one point there was an incident with a main piece. A hole straight through. It was ruined. Eric called, took the piece, drove the 45 minutes back to Ikea and returned with the new part. By that time Caleigh was asleep. We stayed up until midnight finishing the bed.

The next morning we put the mattress in, moved the other furniture into her room and set things up.

Caleigh took her first nap in her new bed and did wonderfully. We had ordered the bed railing from One Step Ahead awhile back. It's the longest rail I could find. The solid three sides to the daybed are perfect and the bottom drawers are very handy for holding all the medical stuff that I don't want to stare at everyday.

I haven't put anything on the walls yet. There just hasn't been time. Caleigh is sleeping well in the new bed. Although we are still up at least 2-5 times for diaper changes. The first night I just sat in the rocking chair and watched her sleep. The crib is gone. Our little baby is growing up so fast. It was a bittersweet moment for me.

I wake up to Caleigh sideways in the bed almost every morning now. No more screaming because she gets stuck. The sheets are harder to change on the new bed. It's lower to the ground than the crib was and obviously bigger. We use lots of underpads to catch the inevitable, massive, nightly leaks. So far it hasn't helped and so far I've been doing laundry everyday. We'll have to come up with a new system and get used to the new set-up before things start to run smoothly again.

I really am happy with our choices. I think this big girl bed will last Caleigh a really long time.

Allergies.

Throughout the weekend Caleigh's low grade fevers persisted on. She had no other symptoms and felt fine. All cultures came back negative. We've decided that the drainage from her central line is just the area trying to heal. It never gets any air so it will take much longer for it to heal up. Caleigh's last fever was Monday afternoon. Something viral, but were are very happy that Caleigh was able to fight whatever it was off so well.

Wednesday we had PT and our orthotics lady came out to check on Caleigh's AFOs. Caleigh's feet have really grown since she started standing more. They widened the base a bit and extended the length what they could. We'll probably get another 3-4 months out of these and then we'll have to cast for a new pair.

This morning Caleigh woke up with a barking cough & snotty nose. Seriously, it's been an exhausting week.....no really. We did a breathing treatment, used suction on her sweat little nose and I made an appointment with our Pedi. Turns out Caleigh's current allergy med just isn't cutting it right now. I don't doubt it either. There is a layer of yellow/green on everything. The pollen is terrible right now. So our doc prescribed an antihistamine and decongestant for her to take until the drainage slows down. So no need for breathing treatments or antibiotics. Just a little pollen therapy.

I'm in the process of switching home health companies, switching respite carriers and interviewing helpers. All of which have way too much paperwork & time involved. Just a little something to keep us busy......

Tomorrow the Dynavox rep is coming out to show us their communication devices. After being cooped up in the house for 4 days waiting out the fever, I've decided to get out of the house tomorrow for a much needed mani/pedi session. I will be thinking of nothing while my tootsies are being pampered.

The School Visit

Last week Eric, Caleigh and I loaded up and headed down to what will be Caleigh's pre-school. In Texas, children with special needs transfer out of Early Intervention Services at the age of 3 and move into the school district. It's called PPCD and it is not a required move.

The school has only 3 & 4 year olds. One side of the school is a pre-k based on financial need. The other side has a class for special needs children that are not mobile. There is another class that is blended. Mostly children with autism, & speech delays.

Our therapists have been encouraging us to visit the school. So I made an appointment. The school isn't too far from our house. We showed up during the change of classes. There is a morning class and an afternoon class. The children had just gotten off the bus and the teacher and 2 aids were getting the kids out of their wheelchairs and changing their diapers. Wheelchairs are left out in the hall during class time.

We met the teacher, the PPCD coordinator, nurse, PT & ST and both classroom aides. They were all very excited to meet Caleigh.

There were 4 children in the class and 2 were absent. All of the children were not mobile or verbal. There was one little boy who repeatedly blew raspberries and Caleigh thought it was the most hilarious thing and laughed and giggled every time he did it. She was already chumming up with the class clown! Everyone thought Caleigh was adorable with her giggles.

If we send Caleigh to school when she turns 3 she would get PT, OT, ST and Music Therapy throughout the 5 day week. She would go for 3 hours each day. They go on field trips, play outside and have gym time daily. They also work on brushing teeth, potty training and they have every piece of equipment you could imagine. Basically pre-k stuff, colors, numbers, animals. Stuff that we are doing here at home + life skills.

Eric and I enjoyed visiting the school. It was a positive experience for us. The teacher was wonderful and we've heard great things about her from numerous sources. You can see the love for what she does and that is very special.

Now that I've said all of that, here are some cons that we have to consider.

After meeting with the school nurse, Eric and I feel like we would need to send a competent individual to school with Caleigh. We haven't found that person yet. The school nurse is just that... "a school nurse" the nurse for the whole school. She doesn't have the experience with central lines that we would feel comfortable with. She is proficient with g-buttons, but they did question the fact that Caleigh is hooked up 24 hrs a day. Most children just get bolus feeds.

Germs.

The moment we walked in the doors everyone was all over Caleigh. Touching her cheeks {yes, I know they are super squeezable}, patting her on the back, getting right up in her face to talk to her. All completely normal things, but for Caleigh it adds another level of protection that we must provide. We've spent the first 2.5 years of her life protecting Caleigh from being sick. As this past weekend has shown us, a little fever can totally ruin 5 days and send us to the ER. A stomach bug can set her back on feeds and up the amount of TPN she is on. A set back. It's just a lot to think about.

The second problem we have with the classroom setting is that none of the children are mobile or verbal. They are integrated with the rest of the school some of the time, but probably not enough for our liking. To get the socialization that everyone raves about, Caleigh would need to have peer models in her class. Ideally, at least one child that is more mobile than her and at least one child that is more verbal than her. It's just not in this classroom. At this point I feel like I can get together with a couple of my girlfriends that have kids around Caleigh's age and start a play date to get the "socialization" that is often used as a key point to sending your 3 yr old to school.

It's only 3 hours a day and both Eric and I agreed that if Caleigh didn't have the medical stuff that she does; we would be sending her to school in August. As of right now I think we will be waiting another year to take on that adventure.

Caleigh will be evaluated for the school system in June. We will continue with the process because there is another option that is very hush hush in the school district. Homebound Education. If medically necessary, per a doctor, a teacher will come to your home to teach and help with ideas. Obviously the school district doesn't want this to happen. So we will continue on through the IEPs and ARD meetings to get Caleigh the services that she needs.

As of right now that's the plan. The scary school decision has been made. The decision I have been dreading since Caleigh was 8 months old and I found out about school at the age of 3. It's really not that scary after all. It's progress. It's a new leaf.

Negative

At about 6pm tonight we got the good news that Caleigh's cultures were negative so far. I say so far, because the lab will continue to watch the cultures for 5 days. So we wait to see if anything will grow for another 4 days.

Her lab work shows some indications that she might have something viral. That would be the best thing. I did take Caleigh into the pediatrician this past Tuesday for a broken blood vessel in her eye. We were there for 2 hours so maybe Caleigh picked something up while we were there.

This afternoon Caleigh's fever went up to 102.4F. Other than that her fever has been right around 100F. She was in a good mood all day and went to sleep easily this evening.

We woke up this morning in a waiting mode. Waiting to go back to the hospital. Waiting for the call. Our bags are still packed and will probably stay that way until Caleigh is in the clear. It's just crazy that a little fever can cause such a disruption in our lives. Every little illness is a hospital trip. Every little sniffle makes us jumpy.

It has been rainy all day which didn't help our intense need to be lazy. I didn't make Caleigh do a thing. We watched Toy Story & Sesame Street. We listened to music and we all took an hour and a half nap. Here and there I moved Caleigh's furniture out of her room and into the guest bedroom. Tomorrow we will be painting the walls in her room. Remodeling the house is a wonderful outlet.

This morning was the March for Babies. We've done it the last two years. Unfortunately, Everything that has happened with Caleigh since January totally threw me off with fund-raising and even the want to walk. I had decided about a month ago that this year just wasn't going to happen. No walk for us. Caleigh's fever didn't help the situation. So maybe next year the circumstances will be different and we can make it out.

Here's to happy, lazy, rainy weekends....at home.

ER Visit

The past week Caleigh's central line site has been oozy, yucky and gross. It just hasn't healed up like we thought it should after our surgeon removed the sutures. We kept blaming the ooze on healing. Trying to scab up. Yeah, right. So last night we changed her dressing again and told ourselves that we could make it until Monday to go into the surgeons office. After all, she didn't have a fever.

After the dressing change Caleigh didn't sleep at all. Have I ever mentioned how cranky I can be without sleep? It's bad. So Eric helped a lot and then we both ended up awake with her most of the night.

This morning I woke Eric up 10 minutes before he was supposed to be at work. He made it, but a few minutes late. We had OT at the house at 8:45. A Cedar Waxwing Bird (had to look it up) flew into our back glass door, fell on our dog, KoKo and immediately died. Our cleaning lady came and made the house sparkle again. All was well and semi-uneventful.

I was taking Caleigh out of her stander and I noticed she felt warmer than usually. I took an axillary temp and it was fine. I took a rectal temp and it was 100F. So that qualifies as a temp for Caleigh. So I packed everything except the kitchen sink. Called the GI doc. Eric headed home from work. We got to the ER at 3pm.

We were taken right back and things went fairly quickly. Blood cultures and urine cultures were taken. We did a chest x-ray and waited for the ER doc to talk to our GI doc.

Caleigh decided to not have a fever while we were there and she also decided to laugh, giggle and smile at everyone that came in. So it was decided that we would go home tonight and wait for the preliminary cultures to grow something. That should be about 24 hours. Caleigh got a dose of IV antibiotics before we left.

We made it home from the hospital around 7:30 tonight. Gave Caleigh her bath, hung her TPN and she is now resting peacefully in her own bed. So much better than a hospital fiasco and right on time to boot.

Eric and I aren't far behind Caleigh in the sleep department. Hopefully she will sleep tonight and we are praying that the cultures don't grow anything. A weekend at home would be wonderful.

Caleigh's Communication Part 2

The Prentke Romich Company is just one of the standard Augmentative Alternative Communication (AAC) companies out there. Last fall I read the book Schuylers Monster. It's written by a local dad, it's a good book and really got me thinking about communication. Schuyler actually uses a PRC device. So in my quest for Caleigh's communication I started with PRC.

Let me just say that our vision therapist with the school district wasn't interested in helping us and basically told me that the school will take care of it. Their process of "taking care of it" could take a year or more. I feel like we don't have a year. Caleigh is in there. She's a smart girl. Yes, I can basically read her mind at this point but I want her to be able to talk however that might happen. So if your reading this, your a parent and you feel like your kid can do it.....then pursue it. Just like other therapies, it's not just going to fall into your lap. I don't know how many speech therapists told me that Caleigh "wasn't ready." So I started with choices, then moved to pictures, then made her work to get the pictures. She is ready.

I contacted the local rep and set up a meeting at our house. I haven't been taking Caleigh to speech therapy since she got sick. It's a 45 minute drive both ways and Caleigh screams the whole time due to pushing feeding therapy. She hates the place. I love the place, but I'm not going to force it. I'm on the look out for an SLP that is open to AAC devices. So since we technically don't have a SLP I asked our OT to come for the demo.

The rep brought out their full line of devices and we set Caleigh up to start using one. Our OT is convinced that Caleigh will use her hand on the screen. The other option would be to use switches to make choices on the screen. Our OT wants her to use her hands and so do we. Caleigh did well in the trial. We set up a key guard so that she didn't accidentally hit buttons. We changed the voice to a child's voice. We set up some buttons. She got it. She got it.

So now we are on day 5 of the trial and I'm noticing some important factors with the device. Once you hit a choice, a second row of choices pops up on the top row. This is a problem for Caleigh. She has to be positioned just right to be able to reach the top row. Most of the time I have to reposition the device and/or hold her arm up while she uses her hand to make the choice. Sometimes she will just hit the first word over and over because she can't reach the second word. You can see this in the above video.

So far Caleigh can tell us that she "want go car" "want violet" "need diaper" "stop." I will say that I am impressed with the language system PRC uses. It's definitely that next step that Caleigh needs. This device itself is a eye opening $8,000.

Ideally once you hit a choice a completely new screen would pop up in that sub category. This would help Caleigh so that she didn't accidentally make another choice and then have to start over. Another issue is that we really can't move the location of the buttons. They are set in a particular location for later on when the maximum amount of choices are on the screen.

Other companies with different devices can do those things. There is another company out there, Dynavox and I have set up a meeting with their rep as well. She will come out next week.

I'm not completely done with PRC. We will trial the device for a few more weeks, but in the mean time we will try other systems as well. Every company and their system is different. We'll just have to see what works for Caleigh.

We will be trialing an Ipad with the Proloque2go app as well. Our OT owns the Ipad so we will be trying it out. I'm excited to see if this will be a cheaper and easier way to communicate.

Caleigh's Communication Part 1

don't forget, you can click on the video to open it larger in YouTube

Back in January I took pictures of things Caleigh loves and does on a regular basis. From toys to diapers there's a picture of it. I made them 2.5 x 2.5 in size. I laminated them. I put a piece of foam board on the back and then on top of that I put a strip of magnet. I found a nice to go magnet board and wholla.... communication board.

Turns out it was just a fancy customized choice board. To work on fine motor skills we would ask Caleigh to not only touch which choice she wanted but she has to pull the picture off of the board. She got the idea instantly, but she had already achieved cause and effect previously.

Caleigh will do this with me all day. One after another if I had her too. She enjoys making choices. Since starting this process, Caleigh has started crossing mid-line to make her choice and has started playing with her hands, or holding her fingers together. She has never been able to do this. Her precision has become more accurate as well.



Positioning is a problem for Caleigh. Her dystonic movements can be very wild while she is trying hard to make a choice. She is quite strong too. You can see in the first video how she moves the board that I am holding while trying to get the tea pot. So getting the board to stay in place is a challenge right now. Caleigh's chair helps position her, but we really don't have her in it enough throughout the day. Perhaps we should?

Last fall, I got in touch with our local representative at the Prentke Romich Company . Caleigh is past cause and effect and she is past making choices. She needs language. She needs a voice. She needs more than a scary button that belts out mom's voice for one choice.

So this past Friday, the rep came out with a large bag full of goodies.....

The Impulse Buy

My garage is FULL of impulse buys for Caleigh. Things we thought might work at some point. Things that may have worked briefly. Things that worked but then we found something better to replace it. Things that didn't work at all but had been so extremely modified that it was beyond return. I've slowly learned how to gauge if something will work for Caleigh, but it definitely took some trail and error.

The other day I broke down and went to the mall to order some contacts. Mainly because I hadn't changed my contacts in the last 3 months and I feared my eyes may actually fall out. I had my vision checked back in October, but never made it back to place the order.

As soon as I walked in I saw the kids glasses frames. I immediately jumped on the "Caleigh needs a cool pair of sunglasses wagon."

Now let's back up two weeks....I just bought a pair...but they didn't work. They wouldn't stay on Caleigh's head. We've used straps, elastic and plastic. We've tried regular hang out on your nose glasses too. Nothing worked.

So why on earth I thought a $100 pair of SPF 40, Polarized glasses would work better is beyond me, but I went with it. The manager, seeing Caleigh, her tubes and her wheelchair decided we should get half off the frames and lenses. Very nice of him.

While ordering, Eric and I watched Caleigh pull a box of glass cleaner on the floor. We both smiled at each other while she worked her little heart out and when it fell we cheered and giggled. Ah, the little joys of achievement.

We got done and headed home. I joked how we just chunked another $100 bucks down the drain and felt guilty about it.

The next day Caleigh and I returned to pick up her new cool cat glasses. I almost cried. They fit beautifully, they stayed on and they don't hurt her little head. The real test came later that day getting out of the van. Usually Caleigh throws her head backwards as soon as the sun hits her face. It didn't happen. She held her head high and didn't act like the sun bothered her at all.

I'm so pleased with our little impulse buy. Maybe we should go shopping again....

Easter Ears

Many Thanks to Tammy for the beautiful bunny ears!

I think they may have been a bit heavy!

End of week update

Caleigh's been doing well with her eye patching. She actually doesn't seem to mind and hasn't fussed about it yet. She IS using her right eye to see when the patch is on and actually has good precision when reaching for things. We'll just continue on and see what happens.

Wednesday we went to the GI doc and all is well in that department. In fact, after he got a good look at Caleigh, he dropped her TPN down to 12 hours a day. That's just at night folks! It made a huge difference in our ability to jump up a go somewhere. Caleigh's urine output has also calmed down a bit. She was getting WAY to much fluid. We go back to see him in a month.

While we were there I had him look at Caleigh's central line. The incision in her chest had started oozing and was red just in the last week. She didn't have a fever just an ugly looking site. Eric and I have been changing the dressing on it every 3 days instead of 7 because of the discharge. Our GI wanted a culture of the site and for the surgeon to look at it. Since we were over at the hospital anyway I called the surgeon's office and he squeezed us in that afternoon.

When we got there our surgeon decided that Caleigh was having an inflammatory response to the sutures holding the line in place. So he removed the sutures. Now I know what your thinking...... The line is actually cuffed in further up in Caleigh's chest. The sutures that he removed were only there while the cuffed area healed. Didn't do a culture. We came home and did a proper dressing change and then preceded to wait the 72 hours for any signs of infection. This morning the site is less red and inflamed. It hasn't been oozing, but it doesn't look as healed as I want it to be. We'll watch it and maybe go back to the surgeon this week.

Friday was a busy day. We had our assessment and start to music therapy for Caleigh. It went well and I think she will enjoy having it as part of her routine.

Friday was also the first day that I had the lady come clean our house. The day before she came I was starting to feel guilty about spending the money on such a thing. All I can say is it was SO worth it. I was practically giddy all day. For those of you clean lovers out there I highly recommend letting go and handing it over! Snuggling down in my clean sheets, that I didn't have to wash or struggle to put back on, was just amazing. Right now she will be coming every 2 weeks. It feels like Christmas around here!

That same day we had another nurse come to meet us. She was nice. Showed up 30 minutes late and complained about her hour drive. She seemed almost disappointed that Caleigh's TPN had dropped to 12 hours. Not cool. She can only work Fridays and wants to do so from 7a-6p. Caleigh doesn't even get up until 8 and mommy doesn't even wear a bra until at least 9....so that's an issue.

So here's the real deal about nursing. I just don't want it. I don't want someone to come in and immediately check Caleigh's vitals. I don't want someone to have to go everywhere with us. I don't want to just leave Caleigh at home because I can. I want her to experience life. I don't want to take forms to our doctors and have them fill out the contents of our entire visit for the gigantic binder that sits waiting at our house. I don't want Caleigh's progress to disappoint the nurses because they fear that they might lose their hours. I'm calling them on Monday to cancel. "It's totally me, not you," I've been practicing my break-up lines. Hopefully it will go ok.

We do need help though. I plan on making calls to local universities on Monday to try to get a student to come help with Therapies, Stander time, AFO time, Crawler time, Gait trainer time, Patching time, Stretches and Learning. Those are the things that overwhelm me. Those are the things that keep me from just cuddling up and being mom.

I was thinking about the medical stuff the other day and realized that mixing TPN everynight and flushing Caleigh's line everyday and all the other "normals" that we do daily are just the standard for us. As a first time mom, it's all I've ever known. Instead of making 3 meals, 2 snacks and keeping the sippy cup full; I've got to make formula for the day and make sure the feeding bag stays cold and doesn't run out of Elecare. These medical things are my motherly duties. Whether they are "normal" or not, I'm ok with them.