Tuesday, April 23, 2013

Well Call Me Baffled

Some of the test results are in, and I have mixed feelings about it. Both the Abdominal Ultra-Sound
and the Gastric Empty Study came back normal. Which of course is a good but annoying. When you go through so many tests sometimes you just want a clear cut diagnosis. An answer to what is going on and just maybe a treatment plan.

Now if you remember Squeaker also had a Pelvic Ultra-Sound. One of the ovaries was clear enough or something or another. So next Wednesday we get to go and have the Ultra-Sound again and a follow up appointment with Dr. King.

In general I have no clue what is going on with my child and I don't know how to help her. I'm just baffled, boy do I wish I wasn't.

Monday, April 22, 2013

Flash Cards

Obviously we spend a lot of time in doctors offices, hospitals for testing, and at home in quarantine. Which creates an interesting problem, what to do with all that time? Yes we watch a lot of movies, Squeaker plays games on our phones or tablets, and we just bounce a lot. Lately I've been trying to think of more educational activities to be doing. Ya' know letters, numbers, words, colors pre school things. Since Squeaker is still getting the hang of talking and some of her fine motor skills are still developing Flash Cards are a great option.

Squeaker loves her cards. She practices organizing, stacking, putting in and out. And of course what ever is on the card. The only problem so far is finding the cards I want at a reasonable price. For instance we want to work on numbers. Not counting just recognizing the numbers over ten. So she knows eleven isn't one-one. Store bought cards all have pictures to help visualize how many eleven is. Which is great but Squeaker get distracted by the pictures and ignores the number. So it just doesn't work for us. Very frustrating.

The only logical thing was make my own Flash Card Sets. Once I got the basic format done my mind flooded with what to put on the cards. I'm just so excited that I can print it all from home. That way it saves money and of course if I loose a few cards I can just print those ones again. And I have a laminator to make my cards really sturdy.

Sooo here it is the first set. Colors, Musical Notes, Numbers, and Shapes. I made them four to a sheet so the cards when cut are just about 5x3.5. They are even boarded for easy cutting. Just click on the links below the pictures. Enjoy!!!
   
Colors
Musical Notes

Sunday, April 21, 2013

And we're back

Sorry it's been so long since my last post. Life just got a little away from me for a while. Part of what got away from me was vacation.. that's right vacation. Squeaker and I headed up to north to see family for about two week. It was great to have a change of space for a while. Then of course Squeaker got sick... sort of, I'll explain don't worry.

Vacation really was a blast. It was timed so that I could see wonderful sister in law Nell and her two girls Jbug (almost 5) and Bryd (16mths). I haven't see Nell or Jbug in almost two years and never met Bryd. All three of the girls had a blast together. And of course I was staying with my parents so you toss in Danus and Retro who live there. So that is 4 "adults", 2 boys and 3 girls. It was a house full to say the least.

Nell and the girls were there for about a week and Squeaker and I stay for another week to get my braces put on and do taxes for my parents. That's right I'm a metal mouth now. I'm on a two year plan so that means about every 4-6 weeks Squeaker and I will head up to Indiana for a few days. See some family have my teeth adjusted and then come back home. Some times I'm sure it will be exhausting but Squeaker is really making progress on being with family besides Mom and Dad so I'm happy to encourage that. Plus with most Trey's and my family there I'm excited that I may actually get to be at some big family events.

So that's the fun part of life guess I should talk about the sick part. At first it just started with Squeaker eating less than normal. We were still in Indiana so I was thinking she just might be missing home or maybe was starting with another cold. Once home I figured she would go back to normal or their have a full blown cold and need steroids again. Boy was I wrong.

Not only did Squeaker continue not to eat but in the middle of the night she would wake up screaming and rolling around like she was going to throw-up. She would do this for about 30 minutes then go back to sleep for about two hours. Then wake up and do it all again. After doing that for about 4 days I decided it was time to call the GI. Dr. King squeezed us in the next day. So on April 11th we headed down to Birmingham.
At check in Squeaker weighed in at 24lbs 3oz and heigth was 34inches. Not the best numbers in the world because she hasn't put on any weight in six weeks. But she is a little taller so later that day we turned carseats to forward facing. I would have liked Squeaker to be a little heavier but she was almost the max height.

That was the end of the good news. After that is was questions, debate and deciding which tests needed to be done. Squeakers symptoms were, lack of eating, fatigue, not sleeping well, waking in pain, and delayed urination. If you don't know Squeaker drinks a lot of juice. It helps aid greatly with a U-shapped stomach. As she eats less she drinks more, which is normal. Whats normal is the fact that she will only urinate every three hours or so and when she does we are looking at 10-16oz coming out of her little body. I know this estimate because I tested her different diapers so see how much they hold, and she seriously leaks through all of her diapers. And as another frame of reference the average adult bladder holds 16oz. All this leads Dr. King to think something is seriously up. But a few tests have to be run to make sure. The tests ordered were a Gastric Empty Study and a full abdomen/pelvic ultrasound.  Checking for Gastroparesis and urinary retention.

Dr. King also took the time to ask about the Immunology appointment Squeaker had coming up on Monday.  I told him we were seeing Dr. Atkinson and hopefully he would have a clue. Dr. King warned me that Immunologists tend to be scientists first and doctors second. So their bedside manner can be very lacking. And Dr. Atkinson is a great guy but very direct and blunt, so don't take his line of questioning personally. He is just trying to get the information he needs. Armed with knowledge about Dr, Atkinson and orders for tests on Wednesday we went home.

Monday we went back to Birmingham to meet with our new doctor. It was a nice long appointment followed by a large blood draw. It was a tough appontment for me mentally so I have no desire to re-tell the details. Mostly we won't know anything until the blood work comes back.

Wednesday was back to Birmingham, yes that is three trips in a week. Squeaker was pretty mad the drive down since she couldn't have anything to eat or drink since 6:30 and her first test was at 10:30. They did the ultrasound first. Squeaker was a Rockstar and laid very still while the tech did all the measurements. She did fuss and whine a little but otherwise she was perfect.

Right around 11:30 they took us back for the Gastric Empty Study. This is why she couldn't eat before. Squeaker had to eat part of a Honey Bun with a nuclear tracer on it. Squeaker was not happy to eat it at first. She was scared the techs were getting in her face trying to talk to her. The techs and I were just talking about other food options when Squeaker decided to eat the Honey Bun. She ate just the amount she needed to. Thank goodness, what a blessing. Then as you can see they taped Squeaker down, put in Brave and let us be. Squeaker eventually feel asleep, poor thing woke up about 5 that morning with stomach pains. After being under the camera for 1hr we got to walk around the hospital for another hour then go back to the lap to take pictures for three minutes. Squeaker held still all on her own. Such a big girl.

We stopped for some ice cream and drove home.

As of now none of the results are back in. We are still dealing with wake ups, pain, fussing, and whining. The usual when someone is sick. I just hope that there is answers somewhere because I want my baby girl to feel better. And a chance to sleep would be really nice too.