Wednesday, January 21, 2015

Seriously, It's About Time

                                         It took 4 Years, 4 Months, and 17 Days think about that
                                                   4 YEARS, 4 MONTHS AND 17 DAYS!!!
     It took that long for Squeaker's Laryngomalacia to be resolved. That's right the LM is gone! GONE GONE GONE!!!! It is no longer swollen and it is no longer floppy. Squeaker was born with a moderate to severe case of LM. We chose not to do the surgery, okay I was scared out of it by a doctor. But any way she never had surgery, we treated with inhaled steroids and time. Knowing what
I know now I probably would have taken a different path but I can't change that now. It was hard a lot of days. REALLY HARD.
     It got very hard when at 12 months old when most kids with LM are just about out grown the issue and Squeaker was just as terrible as ever. We were still in the ER at least once a month breathing issues, its bad when the ER nurses know you by name. On top of that we were in the doctor's office about every 2 weeks too. We never had to be admitted for monitoring or spend time in the ICU. Thank-goodness Squeaker has my fantastic lung function and oxygenation.
    By the time Squeaker was 2 she was barley talking and having nebulizer treatments upwards of 10 times a day most of the time. It got a little easier when Squeaker was 26 months and started seriously talking. As she was able to start communicating more, which decreased the meltdowns. Which meant her breathing was more stable. Can you imagine being scared of your child having a tantrum because you fear they might stop breathing? How do you discipline a child that can't through a tantrum? I'll tell you it's rough and it takes a lot of patience. This year we did manage to have less ER visits.
     Just after Squeaker turned 3 we had hope again. Winter came and Squeaker stopped wheezing all the time. For 6 wonderful months there were no nebulizers, no inhalers, no ER and minimal doctors visits. It was blissful and we thought it was all done. Then summer hit. Ug we went from no inhalers to 10 times a day again. For Squeaker LM and Humidity never mixed well. We live in Alabama, you can guess that we have humidity in spades. We spent last summer inside. It was rough but breathing is more important. We even saw the ENT and he noted the LM was still present. Better but still there. uggg.
     It started to cool down for Squeaker's birthday and we were able to back off the inhalers. Breathing wise winter was just dandy. We kept up with the inhalers to help stave off infection and flu. It worked pretty well between the IGG therapy and inhalers we had very little illness. In the last couple of months I noticed that Squeaker stopped having stuttering breaths or stopping breathing while she slept. Of the years they had become less and less. When I thought out it I was hearing it maybe a couple times a month, and it was always when Squeaker was ill. Which every human does. Wahooo something normal. I also started to be able to use the humidifier in the house without Squeaker's breathing getting worse.
      Today. Today I took Squeaker to the ENT because she has been complaining for a sore throat for a long time. She also had a runny nose for a couple of months. It just didn't seem right to me. Well the ENT took a look with a rigid scope to see if Squeaker's vocal cords and airway were the issue. And they weren't they are perfectly normal. He thinks it's what is called an non allergen rhinitis. Which is a big way of saying her sinuses are reacting the pressure fronts and moisture changes. That means her poor nose is confused on if it is supposed to make mucus or not. He did suggest when we saw GI I next they may want to do a scope just to make sure their side of life is still in good order. Sometimes esophagus and swallowing pain can confused with throat pain. Especially when you have a little one who is still learning.
     So yup 4 years, 4 months, 17 days. Weighing it at 34 pounds and measuring 40.5 inches. That was when our first condition was resolved. My little Squeaker no longer Squeaks, and I couldn't be happier about it.


Thursday, January 15, 2015

Toothless

Today Squeaker went to the dentist, Dr. Brandon. The dentist is never fun. Squeaker inherited my poor baby teeth. Combine that with teeth grinding, antibiotics, inhalers, nebulizer treatments and overnight drinking and well you have lots of teeth issues.

<--- This was while we were waiting for the medication to kick in.

This is how our day was supposed to go:
1) Stop liquids and food at midnight
2) Go to Dentist at 9am
3) Take the waking sedation medication
4) Wait and hour for Squeaker to get loopy
5) Get her in the procedure room
6) Start the nitrous oxide
7) Clean Squeaker's top incisors
8) Fit caps on incisors
9) Leave Dentist
10) Be home by 10:30-11 at the latest

     It was all great until Step 7. At that point the plan went out the window and we went down a rabbit hole.
     As Dr. Brandon trying to clean off the decay on Squeaker's teeth he started to worry about how much tooth would be left. He tried to figure out if he could even get a cap to fit. He went through what he had. I'm sure you have figured out that Squeaker is not happy about this. Poor Squeaker is being such a trooper. Even though she has been given a pain killer, nitrous oxide and Novocaine she was still uncomfortable and not afraid to let us know. Squeaker wasn't really kicking or wiggling but was pretty vocal that as she put it "I'm Done! I'm Done! I'm Done!". Poor Kid.
     After about 5 minutes of pushing and trying to get a cap to fit Dr. Brandon stopped and turned to me. He told me our options. We could try to glue the caps on but we would be replacing them in 3-4 months. We could try just cleaning and run the risk of further rotting, chipping, or abscess. Or we could pull the teeth. My heart sank. Dang it.... after a minute I just said, "Dr. Brandon I trust you. You do what you think is going to keep Squeaker's mouth healthy." I could see Dr. Brandon's wheels turning, then his shoulders dropped and his eyes got sad and he said "We should take the teeth. I don't want to but if we don't you're going to back here in two months doing something else to these teeth. Or worse we will have to go back to the hospital because it will be a more complicated procedure."
    That's what we did. The hygienist went and grabbed the tools needed. Dr. Brandon sat there with us and tried to soothe Squeaker while he waited for the tools. He was very sweet. Once we had the tools the teeth were out in less then 2 minutes. Squeaker was soooo not happy but the worst was over. After about 10 minutes of cool down time we were cleared to go pick out a toy and leave. We left at 11am.
     Stopped in at Kroger to buy ice cream, popcicles, and some other favorites for Squeaker. Then finally headed home. Gosh it was a long morning.When we got home Trey was a wreck over the news. Trey has naturally good teeth. I mean straight, clean, self healing. At 35 he's had all of 3 cavities I think. Watching his daughter have poor teeth has been hard for him. Feeling that he should have been able to prevent every filling, crown, and pulled tooth. He thought dental health was something that he could help control. He was terrified that at this rate she would lose all of her baby teeth long before her adult teeth came in. Once I reassured Trey that the rest of her teeth were healthy and that there was little or nothing we could have done he started to feel a little better. He really started to perk up once Squeaker started to eat 5 minutes later. She didn't eat a lot but Trey was happy to see that even with less teeth Squeaker wasn't going to change her life, so it shouldn't change his.
     The good news is with these teeth pulled all of the problem teeth are taken care of. She had 6 teeth pulled up top, and the top 4 molars have caps/crowns on them. Her bottom teeth and in perfect condition. Dr. Brandon said their isn't even plaque or tarter on them. He can tell we try our best but life and genetics were just against us. But by taking care of this now Squeaker's gums will be able to stay healthy and grow healthy adult teeth. And those teeth, my friends, are what she will have much longer. For now and the next few years Squeaker gets to be our Toothless wonder.

Monday, January 12, 2015

Another Challenge

Trey has been down and out, for about 3 months now. He will continue to be so for a quiet a while.
Through lots of doctors visits, testing, and resting we have learned that it is a neurological issue. Trey's brain is simply not dealing well with all the input the world gives it. He is suffering from
     For the last few months Trey has been stuck in a bed or in a recliner. He's played a lot of games, read books, and watched a lot of TV. He has started to walk with a cane and that has helped a lot. Which mean he isn't falling anymore and walking around the house isn't as tiring. He's still having to take it easy and limit his time out of the house or with certain activities. Right now the big energy suck is energy to go back to school this semester with two graduate classes. It's only been a week but so far so good. Since Trey hasn't been to work in a couple months I'm glad for him to have something to help test his limits without pushing too hard, since the classes are only a couple hours once a week. 
     As far as treatment goes week he starts a specialized physical therapy program for dizziness. Then in February he sees a neurologist. Hopefully by the time we see the neurologist we will have enough information from the therapist and from tracking daily activities that the doctor can help pin point issues. Or move directly in the testing and treatment phase instead of "try this" and "track this" phase.
     Gosh I'm tired....
headaches, fatigue, vertigo and dizziness. Yes vertigo and dizziness are two different symptoms, crazy the things you learn when you are at the doctors.