Wednesday, March 30, 2011

Good News

We had our endorcine appointment today...

I had a gigantic list of questions.

He answered them all.

I was pleased with all the answers!

To begin with, her A1C is still perfect. The pump continues to do its job. The bruises on her legs from the site placement all look fine. I was given a few tips to change things around a little bit.

He signed off on our Speech request to begin phase 3 and 4 of the G button Wean. This makes me very happy. He felt the need to tell me how hard this was going to be, and not to get my hopes up. All that did was light a fire under me to show him what Kendall (and me) are made of. It will be a lot of work, and require some extra things because she is diabetic, but we shouldn't have any problems.

Starting tomorrow (I'm too exhausted to start today) we will be completing a basal worksheet to determine whether her highs and lows are related to her insulin to carb ratio, correction ratio, or her basal rate. From there, we can safely let Kendall eat and drink when she feels hungry or thirsty. (Sounds simple enough, right!?)

And, the best news of all...our Endocrinologist completely agreed with my gut feeling to halt the iodine drops and not go through with the IMBG scan. He doesn't think it is necessary. He thinks they are "over-reacting and blowing it out of proportion." So, yay! No anesthesia for Miss Kendall for a while!

Kendall has had 2 pretty bad seizures in the past week. We adjusted her Keppra dose and hope that will do the trick. She weighs 31 pounds now, so the dose needed to go up anyway. They both happened while she was sleeping. Another video EEG is in the works right now. Hopefully we've waited long enough and are able to miss flu/cold season in the hospital! We'll see!

Kendall turns 3 on April 27, and we are eagerly awaiting the written evaluation from our school district. As far as I know, there is still a lot that needs to be worked out with nursing and AAC before Kendall begins school. I'm sure it will all work out. I'm not so much a fly by the seat of my pants type of girl when it comes to Kendall, but I am trying to be patient. Our April calendar is filling up quickly, and Justin's traveling a lot, so hopefully we will know something soon!

Ok, that's all. I'm off to do homework and more spring cleaning!

Thursday, March 24, 2011

New Glasses

We picked up Kendall's new glasses yesterday! They are super cute, light, and she's tolerating them well.

When we take them off, she I guess that means she's seeing with them on.

And to think, two and a half years ago, there was a possibility she wouldn't see at all. Between the two dense cataracts she had to have removed and her diagnosed cortical vision impairment, the odds were definitely not in her favor.

To all the moms out there with children diagnosed with CVI, please, please, don't give up. With correction, Kendall can track objects across a room and see fairly well. Her nystagmus and strabismus is still pretty obvious, and looking at her you would never think she could see. But she can. She does.

We had one Dr. (a guy we saw for second opinions back in the "searching for answers" days) tell us her vision will be like anything else on her. Delayed. But with time and hard work, it will develop. And so it did!!!

Have I mentioned lately how proud I am of her? Well...I am. Very, very, proud! :)

Sunday, March 20, 2011

Gone Country

The Gray family and the Briggs family got in touch with their country side this weekend.

Kendall and I have not been back to the farm Justin grew up on in about 2 years. I've been scared something would happen and we would need 911... I've also been frightened about scorpions or allergies, the list goes on and on!

Fortunately, this weekend the stars aligned. Everyone was healthy. Everyone was off work. The weather was beautiful. It was time to face the fear I have of traveling with Kendall. So we did it. Holly, Eric, and Caleigh joined us. (which put my mind at ease since Eric's a fireman/paramedic!) I was prepared for no sleeping and fits since, well, the girls tend to give us a run for our money sometimes. (Kendall has also recently developed a fear of Caleigh! Anytime Caleigh would cough or sing, Kendall cried and pulled her hair. But, this weekend, we successfully broke her of that! I'm glad to know the girls can hang out again!) The slept fairly well, and we avoided any major disasters.

Holly, the girls and I had a great time taking nature walks and soaking up the scenery. And there's nothing like fried catfish, wine out of a plastic glass, and coyotes howling at the moon to bring you back to your roots.

The boys shot guns and did boy stuff...which I probably don't really want to know the details of.

It was a good time. I have more confidence in traveling with Kendall. She adapted to her surroundings. Kamden had a blast, and our lab Chloe is out for the count on my office carpet right now! We are all beat...and will hopefully get a good night's rest tonight!

Here are a few pictures from the weekend... and one of Kendall on St. Patrick's day!







Wednesday, March 16, 2011

Change of Heart

I've chickend out on the IMBG scan. Yesterday we received a phone call from the hospital. It was the anesthesiologist wanting to discuss Kendall's chart with me and her previous problems with anesthesia. I was completely taken off guard. I had absolutely no idea this scan required general anesthetic. I also had not idea it was a procedure that lasted almost two hours.

I called Nephrology back to make sure we needed to put her completely under, and discuss the possibility of avoiding the scan all together if her blood pressures were back in a normal range in the next few weeks. We've had a very difficult time with home health and obtaing a blood pressure machine and correctly fitting cuff. It seems like a lot of people were involved in trying to get one (our nursing agency, our home health supply company.) Everyone promised. Nobody delivered. Finally, I took matters into my own hands and borrowed one from Holly and Caleigh! (Holly's kinda famous for being our go-to pharmacist! The girl can clear any diaper rash or g-button problem and has all the tools to do it quickly!) It's good to have friends like that.

Anyway, long story short...Nephrology kept saying over and over that it is their recommendation to perform the scan. That decision won't change even if her blood pressure is fine since her metanephrine levels were high. is my decision to wait until our Endocrine appointment on the 30th, talk to our Endocrine team and go from there. If we do have to do the scan, I will shoot for next month and incorporate her eye examination under anesthesia all at the same time. Thankfully, Cooks is great about cooperating so we won't have to put her under anesthesia more than once.

It only took me all day and talking to a hundred people to come to that conclusion, but my decision is made. I hate not listening to my Dr.'s...there is kind of a lot of second guessing that comes with it, but at the end of the day, I have to trust that I know what's best for her.

Now...if we could just get that little turkey to sleep at night, we would all feel so much better.

Monday, March 14, 2011

Spring Break

We're enjoying our spring break so far. Today was productive. After a four hour visit to the eye Dr., Kendall had a new prescription, a super cute new pair of glasses on order, an appointment for her next examination under anesthesia, and a shiny new pair of AFO's (I'll spare you listening to the drama involved in obtaining them...the important thing is we finally received them and they fit.)

We started her iodine drops today, the ones we have to have for her study on Thursday and Friday. As soon as I gave them to her, she projectile vomited in the eye Dr.'s waiting room (serves them right for making us wait for so long) So, besides smelling like Pediasure for the rest of the morning, she did fine with the next series of drops through her button. Thursday she goes in for the injection and IV. I'm not really sure what to expect.

I've really been struggling a lot dealing with people. I have absolutely no tolerance for anything anymore. I don't want to be this way. I truly want to expect the best out of people. I don't want to be the grumpy, cynical mom. But I am. In my defense, when you have a child as involved as Kendall...there's really only so much patience you can have. Hours upon hours in waiting rooms, or waiting on people who are late, or on hold with the insurance company (I don't even attempt to call Medicaid anymore) and answering the same stinking questions over and over and over again wears on your nerves. I can actually feel a knot developing in my neck even before I pick up the phone to call hour home health supply company. Automated systems don't work. I need a person, with a name, to address my concerns. And don't even get me started on filling out comment forms. All that seems to lead to is wasting more of my time. These are the reasons I probably seem like a miserable person. I am sleep deprived most of the time, but I do my best to be pleasant...but some days I just can't do it! I wish I could be one of those people who just lets it go, and lets someone else make the complaint, but no. I wasn't raised that way! I'm turning into my mother.

Speaking of my's a picture of her reading with Kendall today! You would never know she just had half her tongue removed, a neck dissection, and a year of poison filling her body. Nor would you ever know she's over 70 years old! So If I can be as tough as her and still look that great when I'm over 70...I guess those genes aren't so bad :)


Ok. Guess that's enough rambling for one afternoon. I intend to spend the rest of the week soaking up the cuteness of my two babies. Maybe hit the zoo or the Botanic gardens, and just enjoy our spring break together. Things could always be worse.



Tuesday, March 8, 2011

Checking In!


I'm still alive. School is kicking my butt. It's not that it is hard really. It's just that I've become a perfectionist in my 30's. I definitely was not that in my late teens/early 20's the first time around in college!

All of the information on "exceptional learners" is really hitting home. I've learned more than I ever wanted to about IEP's and a very opportune time! Some days my head is spinning as I think about the ginormous journey we have ahead of us with Kendall's education. But most of the time, I catch myself thinking how other people (people who don't have the time or money to learn all the in's and out's of special education) do it. There is just so much to learn.

And it breaks my heart how many people there are out there that just trust their early intervention programs and school districts to guide them in the right direction. We have been very, very lucky with a great birth to three team, and hope to have the same continued success in the public school district, but unfortunately Texas is in a budget crisis right now and everything seems to be up in the air. That whole thing makes my head spin too!

So, I am alive...I've just been busy with school and life. (which leaves little time to blog about it!)

Kendall's had a runny nose and cough. Her lungs sound clear today, but if it continues past tomorrow I plan to take her back in to the Dr.


Wednesday, March 2, 2011

MIBG scan


So, good news and bad news.

Kendall's echo results are in. Her heart is perfectly fine. That's the good news.

Bad news, her metanephrine levels are still they have scheduled a MIBG scan. Click the link for more information. I couldn't even begin to explain it. All I know is it is another test. One that will take up two days of our Spring Break, and also require me to give her nasty tasting drops by mouth daily. Good times ahead!

The Nephrologist is concerned about possible tumors on her kidneys. Pheochromocytoma to be exact.

I am not concerned. My gut tells me everything's fine...and this is just another thing to rule out.

So, that's what we will do.