Friday, June 28, 2013

Family Fun

Braces Kids- Retro, LR, and Dane
   My side of the family had a little reunion. Almost everyone was there but it was little because it was during Cub Camp so we were all running in a million directions. Since my brother Shwaa and his family are moving to Germany with the Army I was happy to get whatever time I could get. We greatly missed Alan and Annie but we still had fun. It would have been great to do more together but
it was nice to see so much of the family.

   I spent most of the week with Nell and Byrd. Byrd is about a year younger than Squeaker (and almost as big lol) so they were able to have a lot of fun together. Since Jim was going to be gone for the next week out hiking with some friends Nell and the girl stuck around a couple days. It was nice to have the time to catch up and watch the girls play.

   One of my favorite things we did was bowling. A local alley runs a summer special of 1.25 a game. So G-ma thought it would be fun for all. G-ma was right. We got a bummer lane for Jbug, Squeaker, and Byrd. Then Nell, Retro and I played on a regular lane. G-ma helped the
little girls. We only played 10 frames since nap time was coming up but it was a lot of fun. The girls just had a blast. Byrd and Squeaker would jump and clap for the pins going over. Then Jbug went and scored and 80! Retro was the only one that scored higher with an 88.

   After Nell and the girls left Retro and I had one more adventure. We went to a drive in movie. That's right they still exist. This one is about 25 minutes from my parents home and reasonably price. $10 for adults and $5 for kids. Under 3 Free. Oh did I mention it's a double feature if  stay that late, and you can bring your own snacks and drinks. They have a stand too with good stuff but you don't have to use it. Also they had a play ground for the little ones to play on while you waited. Retro hadn't been to a drive in and I hadn't been for a while so it was fun. We took Squeaker but of course she slept through both Monsters University and Iron Man 3.

   As much we have to go one with life even though Squeaker is chronically ill, eventually it all comes back to reality. Squeaker has come down with an upper respiratory infection. So back to albuterol every 4 hours and more antibiotics. Hopefully we can knock this out of her and stay off of the oral steroids.

OT, ST, and GI

This info is technically a couple weeks old but oh well.

  We had Squeaker was assessed for Occupational and Speech Therapy, (OT, and ST). It was no surprise that she scored behind. I knew that... anyone that spent time with her knew that. The good news is Squeaker isn't far behind but because 3-5 is where a lot of progress is normally made in Speech and Fine Motor Skills there is a concern that Squeaker would fall way behind. With therapy we are hoping to help push her to keep making improvements. If she catches up then great if she stays just a little behind that's okay. The big thing is to keep moving forward.

  Squeaker lacks a lot of hand muscle and has slight tremors. The big goal in OT right now is stringing. The therapist (Laura) wanted Squeaker to have beads with extra large holes that she could string on pipe cleaners. The pipe cleaners hold up on their own making stringing easier, but still building the skill. The beads that would work ranged in price from 30cents a bead to $1.00 a bead.

Not to mention that none of them were local so I was looking at a week before they even got to my home. I decided to make our own. With some coupons I went to the craft store and purchased some polymer clay (Fimo, Sculpey) and made my own. I played with textures, colors, size, and shape. They came out really good in my opinion. Squeaker took right too them. Then when we saw Laura the next week she was in love. Big holes, not plastic, lots of texture, and very colorful.

  In Speech therapy the current goal is stringing more words together. So anytime she says something to us in stead of just saying it back to correct or encourage pronunciation we have to add a word. Sounds easy right? Try it. If your child asks for "Milk" you have to say "Milk Cup" or "White Milk" or "Milk Please". In the moment it gets really hard. Especially when the child starts adding a word. Now they are saying two words and you have to say three back. Ack! Squeaker's big thing lately is she'll come up to you with her arms up and say "Carry". Well I say back "Carry Me." After a few times she started saying "Carry Me". Okay great now I add "Please". Once she said "Carry me please", oh heavens what do you say? Thankfully I thought of "Carry me please mommy". Squeaker doesn't have to say all the words to get what she wants. But by adding words she learns how they link together.  I have the distinct feeling speech is going to be the harder one to make progress at.

   We also say Dr. King in his new office! It's like heaven. Large play area out front with great toys. A lot of comfortable seating. Then in the rooms there were toys too. Oh and it's much easier to get too since I don't have to go downtown. WAHOO! It was a really great place. What made it an even better day was Squeaker weighed in at 25lbs. You read that right 25 POUNDS! That means since starting the Clonidine 2.5 weeks earlier she had put on almost a whole pound. It's amazing what sleep can do. We would love to continue to see more weight gain like that but don't expect it. I'm sure we will still see bumps in the road but man it's a start. Not much else happened at the appointment. It was mostly just a check up. He did want to check her thyroid again (spoiler it's normal). We don't have to go back until October unless we have an issue.

---So you know no only did Squeaker weigh in well but her height is 35 inches. Which means her weight, height and BMI are all right about 15% for her age. That is a pretty high percentage for her and it just makes me really excited. ---

Sunday, June 9, 2013

Sleep Arrived

It has happened sleep has entered this house. What is even better is it wants to stay. Wahooo!

You'd never know she only had 3hrs sleep.
About 2 weeks ago we saw Dr. Makris (Squeaker's pulmonologist). We ran into him in the hall as we were heading to our room and of course he asked how Squeaker was doing. I told him about everything but then I said "And she doesn't sleep. We are getting about 5-8 hours a day." He stopped going through paperwork and looked at me in the eye. He just looked at me for a couple of seconds then responded, "I can see. I'll be in soon. I just have one patient in front of you." He headed into the other room and we waited in ours.

It was only about 10 minutes later that Dr. Makris came in to see us. We talked about everything that was going on. All the sweating, over heating, wheezing, coughing, not eating, and not sleeping. Dr. Makris looked at me and asked "We've sweated her right?" Which is medical speak for having done a Cystic Fibrosis Sweat Test. I said "Yes, twice. And the genetics test. Which was normal." Dr. Makris looked very pensive and said "It's like she has CF without having CF." Then he said something I wanted to laugh so hard at. "I'm so irritated that I can't find the cause." Now I wanted to laugh at this because at our last appointment with Dr. King he said the same thing. Just about word for word. To hear two specialist be "irritated" about not being able to find a cause just makes me so happy I want to laugh. It shows just how much they care about their kids.

Mini Golfing Memorial Day
Okay so the sleep thing. Dr. Makris looked at me again and told me he wanted to medicate Squeaker. My response was "Yes Please. It's really that bad. Trey and I are having to take turns being up with her. So one is getting much sleep." Dr. Makris prescribed Clonidine. Which is used to help lots of conditions, including insomnia. It has made such a huge difference in our lives. Within 20-45 minutes Squeaker can go from bouncing off the walls to out cold. The other thing we have noticed is that because she isn't so stressed about falling asleep that when Squeaker transitions in sleep cycles she can roll over and go back to sleep on her own. She still wakes up about every three hours to have something to eat but hey that is a lot better than where we were.

Just couldn't wait to get in the water
There is one downside. Now that Squeaker is sleeping more solidly at night she isn't recognizing as easily she needs a nap during the day. Some may say, "She's almost 3 it's okay to drop nap time" And if she was a normal kid I would yes your right. But you have to remember this child has been sleep deprived almost her entire life. Once I can get Squeaker asleep for a nap she sleeps on average 3 hours. Then she will go to bed at her normal time. That tells me Squeaker still needs that nap time most days.

This is our new general sleep schedule. Squeaker wakes up around 7-9am. 7am is a little early and Squeaker will still be grumpy but it's when she wakes... Then nap time is about 3:30pm to 6:30-7pm. I think Squeaker would nap earlier but then she'd never see Trey, so nap time is right after Trey leaves for work. About 9:00-9:30 is when Squeaker gets her pill (yes the Clonidine is a pill) and is out by 10pm. That means in general 12hrs a day Squeaker is sleeping, and it is great. Although we still have some issues, hey she's a toddler, there is less throwing of things, less melt downs, and more patients from both Trey and Me. Not just with Squeaker but with each other.

There is one other side effect, Squeaker now talks in her waking states.

Squeaker's Sleepy Sayings:
"I'm alright, I'm alright"
"Bye bye dream"
"Mommy Love"
"Belly Rub"
"I nigh nigh"