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.

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.

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.

Breastmilk Power

2012- She would sleep in the strangest places

I am pro-breast milk. Whether it's nursing, pumping, donor milk, whatever. I think breastmilk is awesome stuff. Now this doesn't mean I'm not for formula. I think it has it's place. For people who chose it, or need it to supplement or need it entirely to feed baby. Go right ahead feed your baby. That's what is super important. For us though pumping breastmilk exclusively for Squeaker was probably the best thing I could have done for her young life.

During the first 14 months of Squeaker's life I pumped milk and would feed it to her in bottles. This was very difficult most days but it was worth it. At about 4 months old the doctor wanted us to supplement in formula with the breastmilk. Mix the formula powder right in for the extra calories. The only one that didn't cause serious gastric issues was the amino acid based formula made for cystic fibrosis infants. But even that one was rough for her. It was decided that we would just stick with breastmilk and as long as Squeaker wasn't loosing weight.

I won't say that Squeaker wasn't sick for the those 14 months. She was having nebulizer treatments daily, oral steroids regularly and about once a month we ended up in the ER with a breathing problem. Squeaker had also started seeing her Gastroenterologist by they time she was 7-8 months old. Growth was slow but it was there and very few rounds of antibiotics. As crazy as it all was life was alright and we were getting in the swing of our lives.

Then I stopped pumping. My poor body just couldn't do it anymore, and Squeaker was doing a great

2012- Such a face

job eating food. It was time to just quit. Even knowing how important it was for Squeaker I would still have stopped at 14 months. The timing was right for many reasons it was just shocking to see how much breastmilk effected Squeaker's health.

Like I said while on breastmilk Squeaker wasn't the healthiest kid. But it was mostly related to the LM. Suddenly after she stopped getting breastmilk she got an ear infection. 3 months, and 4 course of antibiotics later Squeaker had ear tubes put in. No joke within 2 weeks of stopping milk she started the infection. And it never went away until she had tubes put in. So around 18 months old Squeaker had tubes put in. A few weeks after that she had two teeth removed that had rotted out due to medicine complications. Well folks it was all down hill from there.

Squeaker was all of a sudden never healthy or gaining weight. We agonized over breathing, sleep, eating and balancing meds. Yeah that was 2012 and it was rough. The longest stretch Squeaker was healthy was 10 days. And maybe two days each during the other months. That's about 32 days. Which means Squeaker spent 92.3% of the year sick. Wholy Cow! Think of that in terms of a day, everyday you would be healthy and functioning for 1.85 hours. How much do you think you would get done in less then 2 hours everyday? If you could control that time when would you use it? Would you get two really great hours of sleep and muddle through the rest of the day? Or would you muddle through poor sleep and then have two hours during the day where you felt great and could accomplish anything? Could you live like that day in and day out for a year? All while not knowing what was wrong.

2013- Getting ready to have teeth out

It was in late 2013 after lots of testing and sleepless nights that we found out Squeaker has an immune deficiency. Want to know what some of the questions I was asked by the immunologist? "Was she breastfeed?" and "Did she start to get sicker after you stopped?" My answers were, yes and yes. Based on those two answers the doctor knew he needed to do some testing. How crazy is that?

I mentioned her weight. Want to see how different her growth rate was? Well here you go.  
Sep-2010 to Dec- 2010 gained 3.61 lbs
-----Breastmilk Only
Jan- 2011 to Dec- 2011 gained 7.5 lbs
-----Breastmilk and Food
Jan- 2012 to Dec- 2012 gained 3.5 lbs
-----Food Only
Jan- 2013 to Dec- 2013 gained 3 lbs
-----Food Only
Jan- 2014 to Dec- 2014 gained 7 lbs
-----Food and IGG replacement therapy

Look at those numbers. Breastmilk and IGG had pretty much the same effect on weight gain for Squeaker. It's almost enough to make me think about re-lactating, (yes that is a real thing). Yeah... maybe not. I did think about it a couple of times but just felt it wasn't right for my body or Squeaker. Low and behold she now hates milk and given her stinky immune system at some point she would still need the IGG therapy. So it would have been a lot of hard work just to end up in the same spot.

It just amazed me as I was going over Squeaker's charts this week. She weighed in at about 34lbs and

2014- See the difference?

almost 41inches tall. Those are both on the chart! 36% and 44% respectively. Then to realize that she hadn't charted growth like this since she was on breastmilk, made me feel pretty good. Especially considering a lot of the self doubt I went through while pumping because Squeaker did have a hard time putting on weight.

Just wow....