Bunny Eyes

This past weekend we took Caleigh to the annual Beeping Easter Egg Hunt. Our local division for Blind Services puts it on every year. We went last year and this year was better, but WAY too windy. The wind was blowing 30-40 miles an hour. That makes for a miserable Caleigh.

In usual Caleigh form she was hunkered down in our shoulder with her eyes closed. So sensitive to the sun light. The Easter Bunny was back too. All in all we had a good time.

This event marks the one year anniversary of meeting The Briggs Crew. We are so glad that we got to meet them. I can't imagine the last year without someone that understands us so well. We just love their family to pieces!


~~~~~~~~~~~~~~~~~~~~~~~~~~

So today we went to the new eye doctor for a second opinion. He was a nice man and did a very thorough exam. Basically, he said that Caleigh is slightly near sighted but she would need to have an eye exam under anesthesia to get a correct reading. Caleigh wiggles too much to get anything exact. If we get her glasses the prescription would be an approximate guess at this point. From what he can tell she only has a small near sightedness so Caleigh's world isn't dramatically restricted right now considering her development. Again, we go back to the cortical vision impairment as the cause of her vision problems.

As far as her strabismus or eye crossing goes; he wants us to patch her good eye which is the left for two hours a day. Hopefully we will see some improvement with patching. She is using her left eye to see more than her right. Right now Caleigh's right eye isn't always turning in and until it is a consistent distance inward surgery isn't an option.

He referred us to a Retina Foundation that could possibly do more real life testing to tell us what Caleigh is actually seeing. I'll have to look into this more because I'm not sure if Caleigh meets the criteria.

This was a good appointment. I think the outcome is the same as our first minus the patching, but with the doctor explaining himself much better.

Tomorrow we're off to the GI doc and then we will be done with doctor appointments for the week.

Blood Pressure Baby

Today was our appointment with the Nephrologist. He marveled over how big Caleigh was getting and looked at some tests that were done the last time she was in the hospital.

When the ICU team checked to make sure the yeast in Caleigh's central line hadn't spread to other areas of her body they did a kidney ultrasound. At the time we knew that the yeast wasn't in her kidneys and all looked well. Today the doc confirmed that Caleigh's kidneys looked good.

I brought in a three page log of Caleigh's blood pressures since January. Of course when they did vitals her BP was very high. So I had to explain that we have been taking her BP while she is asleep so that her muscles are relaxed. The doctor said that the way we have been doing it is exactly right. Keep checking while she is asleep. I told him that I was worried about not giving her meds when she might really need it and he said that if her BP was actually high then it would be high even while she is asleep.

I don't know how many times I've had nurses look at me like I'm crazy when I tell them that they won't get a good BP. I don't know how many times I've set there and let them try and try again because the machine errors out or gives a crazy reading.

Verification is a wonderful thing.

We are keeping the blood pressure medicine on hand if Caleigh needs a dose. As of now we haven't given her the med since March 5th. We'll continue to check her BP at night and at nap time and we won't have to go back to the Nephrologist until July.

Tomorrow's agenda includes a second opinion from a new eye doctor.

Set your Piggies Free

Caleigh's hair is finally long enough to try tiny piggies. Pig tails, that is. Some days it's a battle and others she could care less. I think they make her look so grown up. My little toddler....that doesn't toddle. Oh well, she looks fabulous moving however she wants too!

Our big news of the week is that Caleigh is now on 16 hours of TPN down from 20 hours. She is gaining weight too fast on the TPN. In January Caleigh weighed 26 pounds and now she weighs 29 1/2. This is what Caleigh's GI chart now says: "mom states patient is becoming chunky. Please consider decreasing TPN volume." Chunky. Yep, it's in there.

Caleigh's g-button feeds are up to 18ml an hour and will go up to 20ml on Tuesday. My rough estimate is that we have about 11 weeks until Caleigh is up to full feeds. If all goes well and she continues to tolerate her feeds, she will be on her way to being TPN free once again. This is my secret, ok, not so secret plan instead of surgery. Our doctors know we want to try to advance feeds first. So that is what we will be doing over the next 3 months.



Nursing has been a mess lately. I've only really met 3 nurses and each one had their own weird way about them. They aren't coming back. The company has apologized on several occasions for the rough start. Since Caleigh has a central line she has to have an RN. The general pool of home health nurses are LVN's. The company can't do central line training. The nurses have to have experience. So our choices are slim. I've agreed to continue interviewing nurses as they come up, but I've made my feelings clear. I haven't seen any in over a week and it's actually really nice. I've thought about moving companies but I'm not interested in going through everything again.

In an attempt to make me feel less overwhelmed we have hired someone to clean our house. She starts this Friday and I can't wait. This means a lot more time for Caleigh and maybe some extra time to finish unpacking. I've taken one of our bedrooms....filled it with the boxes needing to be unpacked....and closed the door. Out of site out of mind. So far it's working out wonderfully for us. I've got to "let go" of something and I think letting go of cleaning is a good first step.

This week we had our annual review of our respite Medically Dependent Childrens Program coverage. I learned a lot this time around. We will be rearranging our respite company and getting some other things worked out. Lots of paperwork ahead.

The coming week is full of appointments. GI & Nephrology. A new eye doctor appointment for a second opinion. The start of music therapy. Plus, all the other therapies that fill our days. Busy. Busy.

We're Back

I'm back from my weekish long blogging hiatus. I figured I better write something quick before people start showing up at my door! I basically turned off the computer and walked away earlier this week. I feel recharged. Sometimes the constant reading about kiddos like Caleigh and researching the next best thing becomes too much. I've been working on photography stuff in my spare time. I've been perfecting the art of little girl pig tails. I've also been doing some personal art. It makes me feel like me again when I have art in my life. Plus, the weather has been so wonderful we've been outside whenever we can.

Caleigh hasn't slept well since the time changed.....two weeks ago. Sleepy. Sleep. It has gotten better the last few nights and I'm hoping that she continues to sleep well. It makes the days so much easier on everyone.

As you can see in the pictures, Caleigh got a loaner Pony Gait Trainer. It's basically a fancy pants special needs walker.

We are still working on adjustments with the height, but Caleigh seems to like it. She will hold her head backwards {see below} looking around and then pull her upper body back into position. This works her core trunk muscles that are weak. I don't see a problem with it since she can bring her body back up. You can see the muscles working when she does it. We don't let her head hang back for long and a quick reminder to "hold your head up" usually does the trick.

Caleigh has a bunch going on so I will post a couple of small entries in the next few days with updates. So check back often!

The Eyes Have It

What does Caleigh see? Can she see? How is her vision?

These are questions we get regularly and most of the time we tell people that she can see. Caleigh can see right in front of her. So if you get down on her level within arms reach she can see you. She is aware of your presence and if we walk out of the room she knows. We can hold her attention as long as the object is within arms reach. Usually she will do several glances instead of a long stare.

Caleigh has Cortical Vision Impairment or Cortical Blindness. She gets services through DARS, a state program, which has a vision department. CVI is basically a miss communication between the eyes and the brain. Caleigh's brain injury is the problem. The physical components of her eyes are fine.

Now explaining this and then having your child not look at you, but see that you are there is another question. It's hard to explain. Caleigh will look at something....turn her head...and then reach, grab and succeed in getting that something. She's incredibly accurate with that method. She also makes eye contact too. Just depends. A lot of kids with CVI see through tunnels, or only peripherally, or with one eye. As of now we aren't sure if Caleigh has any of these characteristics. They also have preferences for color. Caleigh doesn't like red, but loves the color blue. She even acts like red isn't there when given the choice. Green and yellow are other favorites.

When outdoors Caleigh will hold her head down. Almost as if she is overwhelmed. She doesn't do well with sunlight, keeping her eyes closed most of the time, but she does fine with artificial light.

We went to the eye doctor back in January before all the TPN stuff happened. This is the same eye doctor that wanted to do strabismus surgery on Caleigh's eyes. We didn't want the surgery because her eyes are not always crossed. Only when she is focusing on something do they cross. The last few times we checked in with him he recounted his need to do the surgery saying that her eye crossing is just her trying to see. Basically she looks at the tip of her nose.

So when he dilated her eyes he discovered that Caleigh is near sighted. Just like her momma. The last time her eyes were dilated she was far sighted like a newborn would be. Now we know. Just like we tell everyone, Caleigh can only see within arms reach of herself.

So here's the new snafu....

The eye doctor is not suggesting glasses for Caleigh's near sightedness. He acted like he was doing us a favor by not having us get them. He didn't even really say why and he wants to check her again in a year. A YEAR. I guess I'm not ok with that. I questioned him and he said that we could get the glasses if we wanted too. No biggy. Our choice, huh?

I've talked to a lot of people about this with varying degrees of opinions.

Caleigh's therapists, for the most part, are all for the glasses. Maybe she will want to creep further if she can see further. Maybe she will reach for toys with more precision. Maybe she will hold her head up longer if there is more to see.

Caleigh's vision therapists really didn't help me with the situation. I was interested in what they had to say, but didn't have high hopes. Good thing, I got nothing.

I've talked to other parents too. It was explained to them that you don't want to over correct a developing eye. For instance if Caleigh's vision is that of a 8 month old and we give her glasses, then her eyes will not continue to develop on their own. They will rely on the glasses from now on. Makes sense, but at the same time you don't want to wait around with the rest of the development if you can help with glasses.

If we get glasses this would be another thing to deal with. Another appointment. Another obstacle. Another accessory. But if we can further Caleigh's development it would be worth those things. Right?

I'm interested in your opinion....So what would you do?

Chalking it Up

So Caleigh's room is closing in on being done. We've almost finished the bathroom in the playroom. We just need to add a few shelves, throw up some photos and whola it will be done.

But I've found something exciting.....

I'm obsessed and very intrigued...


So here's the side of our hand-me-down refrigerator. Circa 1981 and it still blows cold baby. What a champ. I particularly like the creamy ivory color with black plastic panels on the front. arguhmm......

What did I find? Chalkboard Paint!
It was extremely easy to apply. Very thick. I didn't even blink an eye, but maybe the age of the fridge made it an easy choice.

After the paint dries your supposed to "prime" it with a good coat of chalk.

After that your good to go. To Do lists. Supply Lists. Caleigh's Magnets. Doodles. Anything else fun you can think of.

I'm loving it. I want to paint everything with this stuff!

Currently, I have a date with a large piece of sheet metal and a fresh can of chalkboard paint. I can't wait to see what happens.....

Brief

Lately I haven't posted much of the mundane details that have been going on. I haven't even really been on the computer. So I thought I would take the time tonight to give a brief update on what's been going on....other than nursing.

Caleigh now has all of her teeth poking through the gums. This includes her 2 year molars and all the teeth that had been slow to come in. We suspect that the TPN gave her the right nutrition to push the process along. Within the last month she has cut 8 teeth. 8. It's crazy.

Caleigh's feeds are up to 14 ml an hour 24 hours a day. It's not a lot, but she is tolerating it. We've continued making her formula with pedialyte instead of water. It seems to be working. Caleigh's stool is wonderful and she only goes once maybe twice a day. Caleigh's retching has increased as the volume does. We may be looking into a GJ tube instead of the G-button she has now. Because Caleigh's pyloric sphincter is not working properly her stomach immediately dumps into her intestines. The GJ would bypass the stomach and put Caleigh's slow feeds straight into her intestines. This could help with the retching. We are still thinking on it.

Since we signed up for the whole nursing thing we discovered Caleigh's blood pressure perimeters. This is what the kidney doc wants her blood pressure to be. The goal is 109/60. Well, turns out Caleigh's blood pressure is fine. She hasn't needed BP meds in 6 days. No telling how long we have been giving her meds and she didn't need it. From now on we will be seeing the actual nephrologist instead of the nurse practitioner. I'm pretty mad that the last time we went in she wanted to double Caleigh's dose of meds because she had gained weight. We decided to watch her BP and wait. Good thing. The tricky part of this whole thing is that Caleigh's dystonic movements make getting a good reading while she is awake almost impossible. Her muscles constantly contract when the blood pressure cuff is squeezing her leg. Most of the time the machine errors out. Sometimes it gives a crazy reading that you know couldn't be right. At the hospital, they have tried so much that she has blood bruises from the squeezing. So we put the cuff on her before bed and before nap time. We sneak into her room, hold our hands over the machines' speaker and take her BP while she is out cold. This may not be the best way to get a reading. I know that Caleigh's BP, or anybodies BP, should be higher when awake. So what do we do? Well, we have an appointment at the end of the month. I plan on bringing in a detailed log of Caleigh's blood pressures and asking lots of questions. Until then she will be BP medicine free.

Surgery:
It's up to Eric and I when Caleigh's intestinal surgery will happen. Our GI and infection control doc would like it done as soon as possible. Our surgeon referred to Caleigh's abdomen as a "hostile environment" and told us to call him when we were ready. No rush from his point of view. The plan is to go in and revise some of the narrowings that are causing the dilated sections of bowel. This is not the STEP procedure. Our surgeon is thinking that he should be as minimally invasive as possible. So trying this route first is the more logical thing to do. We agree. Instead of the surgery taking 8-12 hours it would only take 3-6 hours. The less they have to touch the better off Caleigh will be. The surgery will still need a month recovery in the hospital. I'm dreading every part of it. I've been reflecting on the possible outcomes of this surgery and as of right now we aren't sure when we will move forward with it. Until then Caleigh will stay on TPN and small feeds.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

On Tuesday my Great Grandma, Caleigh's Great Great Grandma Winnie Mae Herrington passed away. She had just turned 94 years old on Valentines Day.

Grandma Herrington was Caleigh's last great great grandparent alive. I'm so glad she was able to meet Caleigh even though we didn't visit as often as we should.

We'll miss our Grandma Herrington. May she rest well in that big country sky.

Nursing Update

My lack of updating is completely related to our nursing adventures of last week.

On Tuesday the first nurse came. I wrote a post about it. On Thursday, another nurse came to meet us. She stayed for 2 hours and I quickly went over things with her. She seems very nice. Maybe a little too meek, but I would be totally overwhelmed with everything I told her.

On Friday, the first nurse came back. By the end of the 8 hour shift I had decided that she wasn't "the one." She wasn't even really close. There were a number of things that annoyed me and I won't bore everyone with them, but I'm sure that she won't work out. She actually told me that I exhausted her because I Go, Go, Go. I have a 2 year old. Special needs or not, isn't that what moms of 2 year olds do?

By Friday afternoon my head was spinning. The whole week my brain was flying 90 miles and hour. I wasn't sleeping well. I was looking into other avenues for getting help. I was even looking up housekeepers. I was thinking that I'm just not cut out for this whole nursing thing. After talking to several friends and family members I've decided to give it a good trial period. One week and one nurse isn't enough to decide. I must calm down and let it flow. Of course easier said than done.

Today the nurse that we met on Thursday is coming for a full shift. We have 2 appointments out of the house and Eric is at work. At least we will be busy and not staring at each other all day! We'll see how it goes. Positive thoughts for a good day.

Caleigh is doing well. Her feeds are up to 12ml an hour. She off of her TPN from 2-6 everyday and that gives us time to go for a walk or do other things a little more freely. We went to our GI last week. He tweaked a few things here and there, but mainly everything is steady right now.

We're almost done with Caleigh's play room. I'll post pictures soon. It's taken us over 3 months so at this rate we should be done remodeling our house in about 5 years! That's ok, I like having something to work on.

Everyone should go back and read through the comments to my post about A Nurse. There's lots of good information from actual nurses and parents and quite the controversy regarding "why they chose home nursing." Thanks to everyone that contributed and if you have anything to add please do!

How the first day went

Today went well. The nurse arrived around 11am. She was supposed to come at 9, but the company was waiting on blood pressure perimeters from our nephrologist. Turns out our nephrologist had been sick and out of the office because he had given his KIDNEY to his wife! Ok, we might let him get by....this time. For those that don't know...a nephrologist is a kidney doctor. Irony at its best.

Turns out the nurse that came out today has taken care of a 4 year old, for the last year, very similar to Caleigh in many ways, but at the same time completely opposite. Because of that family, this nurse is very open to alternative treatments and options. Some of which we are doing and some of which we have tried. Others, well.. there just isn't enough money to go around to do everything out there. Her openness is exciting to me. Although I do feel like she was constantly comparing Caleigh to her other little girl. I would tell her something about Caleigh and she would say "oh, so and so did this or has that." Eventually, I expressed the differences, but I'm pretty sure I will get annoyed with the all around tally marks. So far that's my only complaint.

When she arrived I noticed she was an older woman. I'm terrible with guessing age, but I was concerned about her being able to carry Caleigh and being on the floor with her all day. She didn't seem to mind though. She plopped right down on the floor and played with Caleigh most of the afternoon.

Today was our day to do labs. Eric and I draw our own labs at home. The home health nurse is there to pick it up. Eric was at work today so I had the new nurse assist me with the lab draw. It was a bit confusing because she doesn't know how we do things, but it went well. I did all of Caleigh's line care. She did change Caleigh's diaper and helped me with the IV pole around the house.

Caleigh had one specific temper tantrum and I was able to talk her out of it instead of scooping her up. Which is rare. This is the tantrum she likes to show off when she wants me and not the person she is with. Other than that one time, as long as she could see me, she was ok with the nurse playing with and talking to her.

I'm feeling better by the minute. The z-pac that my doc gave me really helped. I think Caleigh and I are only a few days away from feeling all better. Tomorrow well start up her therapies again. Eric on the other hand is just hitting day 5. I think he might have an infection too so he'll probably be heading to the doctor tomorrow.

So the first day with a nurse went a lot better than I expected. She might not of turned out to be Glinda the Good Witch...but who is? Thursday the company is sending out another nurse for us to meet. I have a positive outlook on this. I need to have a positive approach to make this work. So, pooofff...bad thoughts be gone!

A Nurse

Tomorrow is the day. The day Caleigh gets a nurse at home.

It's been a long time of fighting it. It's been wearing on my controlling nature. Shouldn't a mother be able to take care of her child herself? My mom did and her mom before her. What's wrong with that mother if she can't? Am I going to hate having someone else in our home or will it fit like a glove and just work?

I'm a picky person. This first nurse may not be the perfect fit. She might be Glenda The Good Witch.....you never know.

I have to tell ya...at this point I wish I had the money to hire a nanny that could help with house duties and Caleigh. A nurse doesn't do that. You should see the notebook that has Caleigh's plan of care in it. The nurse is a nurse. Charting throughout the day. Filling out incident reports. Checking off medications at the beginning and end of every shift. A nanny wouldn't even have those things on their mind. I seem to have a stereotype set up for a home nurse. Like they start off looking at your child in a different way. A disabled way. A medical way. I don't want that for Caleigh. Or maybe I don't want that for me? A nanny is in your home to help the child and you in a different way. A more naive way. Maybe my predisposed stereotypes are wrong. I hope so. For right now, nursing is covered by our insurance and Caleigh's MDCP medicaid. It's covered and it is accessible to us right now and we need the help.

If Caleigh has a doctors appointment, we have to take our nurse with us. If she has a therapy appointment out of the home, the nurse goes. I feel like the public perception of that is that I can't do it by myself. Why should I care about the public? I shouldn't.

I can do it by myself, with my amazing, supportive husband, but I can't do everything else too. What I can't do is keep up with the laundry, clean the dishes, vacuum, go shopping, go running. I can't be the friend I used to be, the daughter or granddaughter I once was. And my gosh, if you could see my scary eyebrows right now! There's just no time to get them waxed. I cancel one hair appointment after another. I'm still lucky if I get a shower everyday. Although Caleigh never misses her bath. Priorities change when you have a child no doubt about it, but when you have a special needs child your life tends to stop in it's tracks. I'm not complaining, don't get me wrong. I'm just yearning for some balance in our life. Eric and I have been treading water for so long now, it's time for help.

I went to the doctor this morning. I've got an upper respiratory infection with lots of fluid behind my ears. No wonder I don't feel good. I don't know if tomorrow will be the best day to start nursing, but in all fairness I don't think it will ever be the perfect time.

So those of you out there with home nursing....how did you start out? Do you have a routine in place for your child that the nurse follows? Does your nurse help with therapies as part of that routine? Do you treat her/him like an employee or like a friend? What have your unique experiences been with nursing?

photo credit http://vintagelifenetwork.ning.com/