Friday, December 12, 2014

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....

Sunday, November 23, 2014

Starting To Choose

    Surprise, surprise Squeaker is sick again. Nothing major just a cold but it is enough to make her miserable and start another antibiotic. Of course Squeaker has been having some massive headaches with all the sinus pressure. The last week or so I've been offering extra pain killers to Squeaker at nap and bedtime. She has been accepting them and yes they have been helping. Then Friday night around 11:30 Squeaker woke with a terrible headache. When I offered some extra pain killer she said "no."
     Honestly I was pretty surprised. I couldn't figure out why my 4 year old, or any 4 year old, would turn down a chance to feel better. It was just so dumb founding. I thought about giving the medicine to her anyway but I stopped myself. Trey and I have been working really hard and letting Squeaker make choices for herself and letting her have some control. Especially about medicine. There is so much she HAS to take everyday and every week. For the night I decided not to press the issue. Yes Squeaker was miserable, fussy and a little loud. I felt she had a right to choose not to take the medicine. She even refused essential oils, back rubs, and a head massage. Pretty much anything I offered Squeaker would turn down. It was hard and sad that she was turning away from all the help I could give but I knew I had to let her chose.
     Now I'm sure you could say, "She's 4 she doesn't get a choice." or "If she is being loud and disruptive then you need to make that stop." And as valid as those ideas are and I have taken those stances before it just didn't feel right for Friday night. Now I will say I had picked a time in my head (12:15am) that if Squeaker hadn't settled into being quiet and calm that I was going to "drug" her. Because sleep is precious around here and I had no desire to be up all night. Pleasantly in the end I didn't have to give Squeaker any medicine.
     Since Squeaker had denied having "tickles", which is what we call essential oils, but I felt she really needed something I went and pulled out the humidifier. Now the humidifier is a scary thing for me. Squeaker does not do well in heat or humidity. The humidity really messes with her breathing. Which yes makes summers in Alabama very interesting.  In the past the humidifier has caused some serious and scary breathing issues. So yes I fear the humidifier. I needed a way to deliever the oils, and the humidifier was all I had. I carefully filled it with water and oil and plugged it in. Turned it on low, said a prayer and hoped for the best. In a couple of minutes our little corner smelled of mint and lavender. I started to feel confident this would help. Sure enough after about 5 minutes Squeaker settled down a little and stole my popcorn snack.
      After snacking for a little while Squeaker asked for her juice and just after midnight she was off to dreamland. Where she stayed for about 3 hours. Not to shabby if you ask me.
     Do I know what the root problem was? Nope. Do I know exactly what helped? Nope. I do know that Squeaker is learning about her body and how to handle it. There will be plenty of times to come where she will have to endure pain, suffering, and hardship. Is it sad she is starting so young? Yes it is. That is something I can't change though. I can only teach her that sometimes you take the medicine, sometimes you just deal, and sometimes you take the risk and turn on the humidifier.

Thursday, November 13, 2014

Blessed We Be

In general we live paycheck to paycheck. I have a chart that tells me exactly what day the bills get paid and with what paycheck they get paid with. I can also tell in each pay period if we are going to be tight on money or have some extra. Yes I am an organized geek. But for the last 4-5 years we have been living very tight, and this geekness has kept us in the black.

It was not uncommon for our finances to be so low that I would wait 3-6 days for payday to come around. Only then did I have enough money to go grocery shopping or put gas in a car. Anyone who lives like this will tell you it's not fun. It was life though, especially with all the financial demands of Squeaker's medical care we just didn't have much choice in the matter.

Over the last year as we have decreased our credit card debt through student loans and a refinance debt reduction loan. So yes we are still carrying debt but with lower monthly payments and much lower APRs. This has opened up our cash so we can stop using credit cards for gasoline and groceries. We don't use our Credit Cards of anything else anymore either. If we don't have the cash we don't buy it. (baring emergencies- Like new tires for the van when one blew out on the interstate)We are also to take some of our freed cash to "snowball" our debt.

Well we still live paycheck to paycheck with a small savings now. We most certainly we can't live a month without a job. Today though we hit a mile stone. We forgot it was payday. For years I looked forward to payday and had every dollar planned and prayed it would all work. Today I was half way through breakfast before I remembered. Trey forgot entirely until I told him I had paid the bills. It's not like there was a ton of money in bank account but there was enough to buy the basics and fill up my van. I didn't even have to think about it. WHAT A BLESSING!!

You may say well you worked hard for it and deserve it. That is true but I know Heavenly Father is looking out for us. He lead Trey to school as a certain time, and we tried several times to get a debt reduction loan until we found one that actually worked for us. It has also helped that Trey has been getting double bonuses from work as a retention bonus.

We still have a long way to go before we are truly debt free but what a relief it is not have make $5 last 6 days. We still have to watch our spending but to know the basics are covered, yeah I'll take it. :)

Saturday, November 8, 2014

Assemble The....

MINIONS!!!!

Aren't they the cutest little Minions?! Squeaker loved having cousin Naomi around to go Trick or Treating with.

Sunday, November 2, 2014

Naps...

If the craziness of this month has taught me only one thing it is the importance of naps. Squeaker is still on medically mandated naps which is pretty cool as a parent. Each day I get a break or sometimes a nap. It's pretty cool. But there are days where life just doesn't permit the time for a nap. I have always tried to keep it too a minimum.

This last month has been a whole land of crazy. With a random weekend trip to Florida, having family come in, doctors appointments, and then just life on top of it there have been more days without nap than I would like. Boy was it nuts, but I learned. I learned that if Squeaker misses more than 3 naps in a 7 day period she will be miserable and tired for about a week. If she misses 2 in a row it takes a week to recover.

Pretty much I have a 1 day lee-way. If we miss one nap it's okay. If we try to push her it never works out for us.

So for now I am guaranteed a break each day, the positives to all the crazy I deal with. :)

Tuesday, October 7, 2014

Even The 4 Year Old

Even the 4 year old can tell that infusion is working. The last two month or so Squeaker's infusion hasn't be lasting all week. She has it Monday night and then by Friday she is starting to act sick. Saturday, Sunday and Monday just all stink in many ways. Lots of temper-tantrums, meltdowns, and lack of sleep. Its just a loooooong few days. Then Tuesday morning Squeaker wakes up cheery, happy and she is less likely to melt down. With the flick of a swtich life is good again, then over the week the light burns out.

Last week was just awful. With Squeaker fighting a cold, an unexpected trip to Florida over the weekend. Oh goodness it's just been so hard. Then last night was Infusion. Or course Squeaker pitched a bit of a fit. But it was said and done soon enough. This morning was Magic Tuesday again. Yes Squeaker is still a little sick, she just can't shake this cold. But there have been few melt downs but nothing major. Then around 1pm Squeaker and I had this conversation.
Squeaker: "Fusion today?"
Me: "No. 6 more days."
Squeaker: (Agitated) "But fusion today."
Me: "Not today sweetie."
Squeaker: (Stamping her feet) "Fusion"
Me: "Why do you want fusion."
Squeaker: "Fusion feel better. I feel better."
Me: "Does fusion make you feel better so you want more fusion so you can feel even better."
Squeaker: "Yeah. More better."

Not only was it just awesome for her to put her thoughts into words. But she gets it! I know she hates having needles stuck in her belly every week. Honestly who would. But that she understood what "fusion" does for her is just amazing. She really is a smart little kiddo.

Thursday, September 25, 2014

She's Normal!!


It is official Squeaker is normal... well partially. I was updating her binder because we have moved from liquid to all pill medicine. And let me tell you that is AWESOME!! The battle of the yuckies is not nearly the battle it was. Honestly it isn't even a battle more nights :) But I had to adjust the information in her binder and I decided to take a look at her height and growth chart.

I was making sure all of her percentiles were right on the chart. Mostly because I was interested to see how she has compared over the years. Well I reached the last entry which was just after Squeakers 4th birthday. She was 29lbs and 40 inches. As you can imagine 29lbs is pretty light for a 4 year old. She is in the 5% percentile for weight. Honestly that is where Squeaker has been most of her life. I remember doing a happy dance when we Squeaker moved up to 5%. She from 4 months to 2 years and 4 months old she was less than 3%. TWO YEARS! So the first time we hit 5% I did a happy dance. Then the next month when it stayed up I did another happy dance. Sure I'd love for her to have more weight but as long as we are on the chart and gaining I'm a pretty happy camper.

Okay so 40 inches tall. This girl just seems tall, especially with weighing so little. I was very interested in seeing her percentile. Drum-roll please....... 55%!!!! That's right baby my kid is in a normal percentile! And, and, and it's the second highest percentile she's ever hit. (Height wise she was 90% at birth) WAHOOO!!!

Now if you can do the math this means her BMI is 0, yes I mean 0. The envy of everyone super model and she eats frosting all day :) Of course her doctors are happy about it, well neither am I  honestly. I'm just going to ignore it for now and revel in the fact that for right now she is normal.

Monday, September 15, 2014

Moving on

So I thought I was going to get more of our vacation photos up but it's just not going to happen. There is so much life to lead and well I don't want to be stuck trying to catch up. So I will let you know that vacation was wonderful. It was great to get away from our normal routine and just be. We did a lot of swimming, a lot of walking, and a lot of fun. It was worth saving up half a years bonuses for.

September 1st, we were all in Indiana so we celebrated Squeaker's 4th birthday with the family. We went mini golfing and had a taco buffet for all to eat. Even Trey's Grandmother (who turned 90 the same week) was there. We had a lot of fun. I can't believe my baby girl is growing up so fast.

In health news there has been a big development. Squeaker beat a cold! Honestly think about that statement for a second. We didn't need extra antibiotics, or steroids. We did use some antihistamine to help stop the runny nose at night and little extra albuterol. It took two weeks but she did it. Squeaker beat a COLD!!!!

The down side to beating the cold all on her own was she lost weight. About 2lbs. :( So she is now 29lbs and 40 inches. Tall and skinny. If she keeps this up she will be the envy of every model in the world. But with her anfinity for letters and sounds she could very easily end up a wonderful writer too. :)

Tuesday, September 9, 2014

Universal Studios Orlando

Instead of trying to tell you about our great day at Universal Studios I'll let the pictures do the talking. Sadly the compression rate on the loader for blogger is really bad but you can still get the idea.
August 11, 2014


Thursday, September 4, 2014

July

Alright here is the catch up. July was a fun even though Squeaker's breathing was anything but normal. We had lots of snoring, wheezing, and coughing. Squeaker spent the entire month on an extended course of steroids and anti-biotics. Some days were still pretty rough.

July 5th-- I took Squeaker to Home Depot for her usual Kids Class. Of course it was a lot of fun but it was also special. This one marked #12 in a row. That's right I managed to get Squeaker to an entire year of Home Depot's Kids Classes. Not only has it been great for Squeaker but I'm pretty proud I managed to never forget and keep going.

July 7th-- Our new diaper bag came in. It has Muppets on it, and Squeaker just loves it. Even though the bag is as big as she is, she still insists on carrying it around most of the time. I'm glad is has perfect size pockets to carry her epi pen.  It just happened to be a day we went black light mini golfing too. Another thing Squeaker just loves to do. I wish there was a more fans in that particular place but it works out okay.

July 16th and 17th-- Trey is finally feeling better at this point. For the two weeks before Trey had another round with Benign Paroxysmal Positional Vertigo (BPPV). So yup he had on going vertigo and nausea. It was rough for all but we made it work. Squeaker and I did out first Jamberry Pedi and Maicures. If you haven't heard of Jamberry yet I suggest you check it out. I'm not a super girly girl but from time to time I like having my nails done. The problem for me was the polish never seemed to hold very well. Jamberrys hold up to my crazy nails and they are much prettier than I could ever do on my own. Squeaker calls them "pretty nails." Squeaker was originally going to stay home from the party and I was going to get some mommy time but alas with Trey barely able to stand without falling over Squeaker went with me.

July 21st-25th-- INDIANA!!! Of course going to Indiana is always fun for us but this time was even
more so. Why? Because Nell, Bug, and Byrd were there too. Bug, Squeaker and Byrd all had a blast together. Blueberry picking, bowling, swimming, and learning to climb trees. Plus playing, running and doing what little girls do. I'll tell you all three of those
girls were tired at the end of each day. :) Sadly it was towards then end of the doses of steroids so they weren't as effective so Squeaker had some rough nights. It worked out okay. One morning after a particularly rough night I was trying to go rest my eyes and Squeaker asked if she could go get Grumpa. I could hear him upstairs working on breakfast so I said, "sure". Next thing I knew it was 2 hours later and I felt like I could leap tall buildings in a single bound. I was so grateful for the extra hands and entertainment for Squeaker.

July 29th-- Off to Birmingham we went. We saw the Pulmonologist and had to change one of
Squeakers inhalers since she still wasn't stable in her breathing. Also we had start doing albuterol before any "vigorous" activity lasting longer than 15 minutes. Especially the outdoors ones. This means I now carry and epi-pen and an inhaler with chamber and mask. I thought you were supposed to carry less as your kids got older? The big news of the day was Squeaker weighed in at 30lbs and measure 38 inches tall! Yes my dear friends my daughter can grow! Squeaker has also decided to start making silly faces half the time when I'm taking her picture. It's fun and frustrating. She tends to change her facial expression too quickly for me to catch good pictures.

Monday, August 18, 2014

I Swear

I haven't forgotten about this page. The last couple months have just been crazy! In good and bad ways, mostly good though. Squeaker had a particularly rough day today so I can't stay long. To anyone who actually follows this blog I haven't forgotten and I will be back soon. Oh and I have A LOT of pictures to share. They will be worth the wait.

Thursday, July 3, 2014

Oh Squeaker

Oh Sweet Squeaker,
      As we read scriptures last night you asked to cuddle on the couch. Not all that unusual since it was late and you had taken your medicine. But what I wasn't expecting was for you to lay down on my chest. This is a position you haven't wanted to cuddle in for well about a year. I'm pretty okay with that because you are so tall it is a little awkward to have you lay on top of me. What was even more unexpected was that within two minutes of you laying on my chest you had fallen asleep. A deeper, calmer, and easier breathing sleep than I had heard out of you in nearly two months.
     Once Daddy was done reading he turned off all the lights and let us just stay on the couch to rest. As I sat there in the dark I thought about all the nights we had spent in that position when you were younger. How for the first year of your life it was one of the few ways you would sleep. I thought about the fact that sleeping on an incline with you on top of me cause all sorts of problems with my back but it was worth it to let you get some solid sleep. Because I knew there was no way you would grow to your full potential if you didn't sleep.
     In the quiet moments where I was trying to fall a sleep myself I would just listen to you breathe. Such clear, deep breaths, such a rarity theses days, especially while you sleep. Then it hit me, I had been wrong.
     Wrong to force you to try to sleep laying flat. Wrong to not cuddle you all those times you begged for it and I just gave you a bottle so I could go back to sleep. Wrong to not realize that your hourly wake ups were accompanied by gasping for air. Wrong to put my desires before your needs. I'm so very sorry that I made those choices. 
     I resolved to do what you needed for sleep. I didn't expect it to be easy or even comfortable for me, but I was going to do it. I knew it may still take a while to find what worked best but I knew it would be worth it.
     So there I sat in the dark starting to fall asleep with you on my chest. You woke about 2 hours later and I moved you to the bedroom. I stacked up pillow nice and high so your head would be elevated to help with your airway. And sure enough as you fell back asleep with those deep, even, calm, and clear breaths you had on the couch. Then I left you to go do a project. I came back 2 hours later when you woke again. This time I laid down for the night too. Snuggled right up next to you so that you would always have contact and know I was there.
     The rest of the night continued with waking every 2 hours or so and me calming you back to sleep. I couldn't believe you were sleeping for 2 hours at a time. What progress! In the morning I did wake up extremely stiff and not wanting to move but you were happy and calm. Waking up wasn't stressful because you had slept. Which meant that you would be happier the rest of the day.
    Here we are, I'm still stretching out the kinks in my back and you have been calm, happy, and using your words all morning. Fantastic! Not bad for a first night. We will get there my love, I won't give up, and I know you won't either.

Love,
Mommy

Friday, June 27, 2014

I Don't Wanna!!!


I don't wanna, I don't, I don't, I don't *stamping feet*

Please, please don't make me do this.....I don't want to do inhalers 8 times a day, I don't want to worry about over heating, I don't want to have to tell my child not to laugh so hard, I don't want to worry about if my 3 year old is gagging on foods we mastered a year ago. I don't want to listen to my child sound horse, coughing, and high respiratory rates. I JUST DON'T WANT TO DO IT!!!!

In the last two months we have re-started inhaled daily steroids, Albuterol almost daily, gone through 4 rounds of oral steroids and 2 rounds of anti-biotics. With all of this Squeaker still sounds like she did at 18 months old. And of course with the sounds comes all the other issues. Squeaker is gagging on food which makes it hard to get her to eat. She overheats really fast because it takes extra to breathe. Plus her anxiety and emotions are all over the place.

Now had we not had 5 great months of very little breathing issues I probably wouldn't care. But to have that taste of freedom, and then to have to taken away. Oh it's heartbreaking.... down right heartbreaking.....

Anyway that is our life now. Inhalers, limited time outside, anxiety, and lots of loud breathing. Do I like this part of my life ABSOLUTELY NOT but I have to focus. Focus on the good things, the fact that Squeaker can bowl a 50. That Trey's summer semester is over and he will be home every night now.

Well it's almost midnight and time for another dose of Albuterol for Squeaker. Then I can finally go to sleep myself.

Sunday, June 22, 2014

Fake It Project- Sharpie Tie-Dye

This visit up north Squeaker was already on a strong antibiotic so I decided it was a great time see all the cousins. I know it sounds a little backwards but it does work for us. It turned out that only Lizzie, Brad and their kids were available. But with 5 kids 7 and under and all with special needs well it's not like we could just go to the park, or zoo, or whatever. It takes just a little more planning. We need some focus or a project to help in keeping the kids focused on positive things. That's how we keep the kids from getting into fights.

The plan was made to go out to Lizzie and Brad's house. With all the therapy stuff, play stuff, and a pool there was a lot to help keep the kids happy. And then I thought, what about a "Fake It" Project to help keep the kids focused. Something fun and enjoyable but super easy to put together.

Every so often I do what I call a "Fake It" Project. It's not a perfectly finished edges, the lines may not be straight, or it may just be unfinished. It may not be the best but it does the job. And then some day I may take the time to make it nice, pretty, and perfect. So it's Fake It until I Make it! :)

I found some light/heat blocking fabric at Joanns. Cut it up and hemmed it so it would hang on a curtain rod. But that wasn't very pretty, curtains in kids rooms should be fun. So I thought lets but something fun in front of the Light Blocking Fabric. Why not Sharpie Tie-Dye Curtains!!!


Materials Needed:
Cut, Washed, and Hemmed for Hanging Fabric
    ---We used White Muslin. I Zig-Zag stiched the edges to cut down on the raveling 
Sharpie Permeate Markers
    ---Sharpie brand work best. You can try fine and chisel tips. Extra fine point won't work.
91% Rubbing Alcohol
    ---We bought 3 32oz bottles and used 2 on about 8 yards if fabric
Spray Bottles
Cheap Shower Curtains
    ---Dollar Store ones work great
Masking Tape


Prep-
Clean off your table or work area. Outside works great since alcohol can be stinky. Lay down the shower curtains and tape them down. Then put your fabric down and tape down if you need too. Put the alcohol in the spray bottles.

Work-
Get out those sharpies out and start coloring! Big shapes and thick lines work best. And lots and lots of colors!!!
Once you are done coloring get ready to spray. You can spray in the same spot you colored or you can move it out to another table or grass. Just make sure it's a place you don't mind getting ink on, or cover it. We did it in the grass.
Now spray, spray, spray. You want to saturate the fabric with the alcohol. That will give the best run of the colors.
Then just leave it to dry.

To make sure the color is good and set toss it in the dryer for a few minutes. When you need to wash your project just wash on cold and dry.

It was a great project. All the kids (ranging from 7-2) enjoyed doing. The kids were super excited to have their own art work on the windows.

This style of Tie-Dye will work on pretty much any cotton fabric. Lizzie is planning on doing some t-shirts, and bags for the family. Last Christmas I did this treatment on homemade super hero capes, those were a hit too.

Tuesday, May 20, 2014

Details

As promised the details of our lives,

The last few weeks have just been a blast. With Squeaker healthy we have been able to do so much. We went cosmic golfing, bowling, a family reunion, and A LOT of playing Wii.

About a month ago Squeaker discovered she now had the muscle tone and control of her fingers to
play the Wii. Yup go ahead and judge us for being awful parents to let our 3 year old play the Wii for more than 15 minutes a day I don't care. It started as a nice indoor activity for what felt like two weeks of rain outside. (If you don't know the pressure changes that come with rainstorms make me hurt and pretty useless). Then we started to see her fine motor and hand eye coordination improving. After about two weeks I started to notice she was playing too much and didn't want to do anything else. So we took a break and showed Squeaker what else she could do with stronger hands. It's no longer and addiction. It's back to being something we use when Trey and I are both tired and need a break.

Cosmic golf is a blast with a 3 year old, provide you have patience. Squeaker loved the way the colors changed in the light. She also loved putting the ball about 8 inches away from the hole and hitting it in. I have to admit if she didn't make it from there she would go and try again from the same spot. She tried really hard to work on getting the ball to do what she wanted with the club. It was also the same day I got my new phone. A Samsung S5, yes I'm in phone heaven. :)

We went bowling about 4 times over the last couple months and countless games on the Wii. Squeaker is a natural at real bowling. With bumpers but no ramp she can score in the 40s no problem. She has even gotten a few spares and strikes all on her own by carefully planing where to puts the ball down and how to push it. We found out about Kids Bowl Free. Where you find the local bowling alley when their free kid bowl times are and register your kids 15 and under. Each week you will get and e-mail with your coupons for each child to have 2 games everyday! Then you can buy an adult pass that you can put 4 names on and for $25 each adult can bowl two games each day with the kids all summer long. You do still have to pay for shoes. But even if you go twice as a family the pass will have more than paid for it's self. I'm thinking of investing in shoes for our family since Squeaker loves it so much. Plus as in indoor activity I don't have to worry about her heat intolerance.

Right before we left of Kentucky Squeaker's heat intolerance showed up again. In the lovely Alabama
way we went from rainy and chilled to 80 degrees and humid. Poor Squeaker was squeaking and wheezing like crazy. So back on a controller medicine she went, and an oral steroid course to get her on track. Bummer... I thought we had beat this. Apparently it was just the cold giving me false hope. Oh well.

Trey's brother Lee recently returned from a 9 month deployment on a navy ship and for some R&R his family decided to head up to Kentucky and see the family. Trey took some time off work and so we had a little family reunion. I say little only for the sense that it was just a BBQ planned on short notice. When you get 6 siblings, 5 spouses, Trey's parents and grandmother, and then add in 18 kids... that is 32 people. Things are never small with a crowd like that. It has been 4 years since we were all together in one place. That was one marriage (Lee and Dee) and three kids (Squeaker, Naomi, McKinley) ago. It was a crazy few hours but man a lot of fun.

Sadly Squeaker took away a few more germs from the party than she could handle. With traveling her breathing still wasn't balance, even with a second run of oral steroids. But a day or so after she really started to show signs of not feeling well. She perked up just enough to pass her physical and have dental surgery. Then down hill it went and fast. Monday morning Squeaker actually asked me "Go bye byes, doctor, feel better?" Can you guess what we were doing a couple hours later?

At the doctors I had to twist the doc's arm to get Squeaker an antibiotic. I told her that Squeaker had had this junk for about a week and trouble breathing a week before that. So I tried to let her get rid of it but it's not happening. The doc (a random resident on the cough and cold call) kept nodding her head and saying "I understand" and I explained that with her immune deficiency she can't fight off things. I had her history binder there and showed her. Again "I understand, no problem. " The doctor looked at Squeaker and said, "Yup she has that sinus junk that is going around. Non allergy congestion usually takes about 3 weeks to clear. Since she is deficient she will need extra time. Come back in three weeks if she isn't better we will give her something." I about yelled at her to go get the attending. Instead I calmly said "She needs treatment now." It wasn't until I got the doctor to look at Squeaker's history and the fact that she takes a prophylactic antibiotic did she realize I knew what I was talking about. She started muttering something about if your on a prophylactic antibiotic you shouldn't get sick and if you do it's and issue. Gee ya' think?? We see the immunologist later this month. I plan on getting a letter from him stating the treatment procedure so I don't have to do so much fighting.

Thus ends 8 weeks of wonderful health. But on to summer we go head strong and full of hope. WAHOOO!!!!!!!

Friday, May 16, 2014

BEST NEWS!!!

Squeaker had oral surgery today. Nothing too major just some caps, crowns, fillings, xrays and a full cleaning. Just much easier to do all of that when she is out. And I'll give a full details of our lives later. But right now I'm too excited about something we found out today.

Squeaker has GROWN!!!! I mean not just a little, A LOT!!!! In the last two months Squeaker has been the healthiest she has been in a long time. And 8 weeks is the longest stretch of healthy we've had in ohh.... ever I think. And guess what happens when Squeaker is healthy? Yep she grows! You ready for the numbers???

3/14/2014- 27lbs and 36inches
Today----
29lbs and 39inches!!!!!!

Yes you read that right. 2lbs and 3 inches!!! I knew she was a little heavier and most certainly taller but wow! This morning you could have knocked me over with a feather!

I know the infusion has been making a big difference, even if there are some side effects some days. But boy oh boy it is very much worth it to see growth like that.

Tuesday, April 22, 2014

So Very Cool

Yesterday I bought Squeaker some new bubble wands. Nothing big just a little Wal-Mart three pack. These little wands are great to toss in a diaper bag (in a plastic baggie) and keep on hand for long waits at the doctor's office. In the past someone has always had to do the blowing for Squeaker. Then yesterday and today it happened. Squeaker started to blow her own bubbles. Maybe little to the rest of the world but around here that is fantastic breakthrough.

3 Years of Breathing Treatment Co-pays: $360
8 Months of Occupational Therapy

Co-pays: $104
Bubbles: $1
Seeing Your Daughter Blow Her Own Bubbles: Priceless

Monday, April 14, 2014

We Are Still Here

So the last 6 weeks have been a little crazy, okay crazier than usual.

In March we saw Dr. King (Gastroenterology). Squeaker had been complaining of a lot of lower abdominal pain. Dr. King added another pain killer to her medicines. Then he ordered an abdominal ultra sound and a barium swallow to check intestinal function. 
The Ultra Sound came back normal. Which is nice. The barium swallow went well... but slow. I mean re...al.....ly slooooooow. For the normal person from the time you eat to the time your food is sitting in your colon is about 90 minutes - 2 hours. So the test usually takes 2 hours. Squeaker's took nearly 5 hours. Yes you read the right FIVE HOURS!!  Which is a crazy long time to hang around the lab and un-able to eat. This test did tell us the source of the abdominal pain. It's just her gut trying to work. So it's the same pain she has had her entire life now she can tell us about it.

IVIG Sub Q has been going really well. About once every three weeks Squeaker has a reaction to the treatments. Usually she will get really fussy, throw up, takes a nap and his fine. A small price to pay for overall health. Speaking of we are about to hit week 4 of being healthy. Yup sticking my child every week with needles is worth it for that!

During our trip to Indiana I had oral surgery. Just some gum tissue and jaw bone removed. It has been a issue plaguing me for years so I'm glad to have it done. I have been healing really well with no complications. A couple more weeks and all the internal swelling and joint pain should be gone. Just in time for summer to hit!

Well Trey was a sweetheart and brought home a Redbox that I really wanted to see and Squeaker is finally asleep.

Saturday, March 1, 2014

Donations

Squeaker now has a "Give Forward" fundraising account. A Mine Craft Bingo lover mentioned that we should set one up. I looked at the options and chose Give Forward because it was simple, straight forward, and they deal with all the non-profit stuff.

I put a link in the side bar so it's easy to find :) Any money donated will go to Squeaker's medical costs. Which include but are not limited to:
Gasoline to 3 specialist doctors- $30 a trip
Medicines- $50-$75 a month (on a good month)
Copays- $13 a visit
Specialized Diet Items
Therapy Toys
and if we raise enough we could probably get an maid service to help deep clean and sterilize our home more often.

I don't expect to raise a lot but if someone wants to contribute now they can. 

***UPDATE***
The Give Forward has closed. We will not be opening another one since the time they stay open is so short. We have decided that since we have several free downloads we should open an Etsy shop. This means if you want to pay for the Mincraft Bingo or another flash cards you can.
Come visit our Etsy shop:
Life With Squeaker

Wednesday, February 26, 2014

Progress

There are times when Squeaker's progress is lost on me. I am with her 99% of the day and night. Which is great for catching illnesses quickly but sometimes I miss the awesome strides that she is making.
Well last week we saw the Pulmonologist (Dr. Makris). We have not seen him for heavens 6 months I think? The last time we were at the office we saw one of his associates. But boy was the Dr. Makris was just thrilled with her overall progress. He couldn't believe how healthy she looked, how she talked to him and even followed him to another room to get a sticker. All things Squeaker was not doing the last time. Not to mention 27lbs and 36.5 inches (yup half and inch taller) is pretty good for Squeaker. Other great news was Squeaker is officially off the nebulizer except for illness or emergency. WAHOO! 3 years I've been waiting for that news. 3 YEARS!!! And poof it's all gone. I was doing a happy dance at that one.
We did talk about Squeaker sleep anxiety which is... um... just not going to go anywhere until we can
communicate with her. So here is to the next 4 years of crazy sleep! doh... Oh well I'd rather know. Dr. Makris agreed to keep Squeaker on the Clonodine to help her sleep so the whole process what so stressful for all of us. Oh oh oh, another cool thing is Squeaker is on Medically Mandated Naps. I mean every mother's dream right? My child is required to take a nap everyday. I even have the medicine to help her fall asleep. Now it may sound a little mean to make a 3 year old nap, but Squeaker is far from a normal 3 year old. She has hardly ever slept the appropriate amount for her age, and shows signs of sleep deprivation. Even if she didn't because of the immune issues Squeaker's system is constantly under attack, and sleep helps the body fight back. So the chronically sick need more sleep. Oh course I love the idea of nap time because I get to nap too. After keeping this kids odd hours 95% of the time I really need the sleep too.
Sub-Q infusion is going well. I am not comfortable doing the whole process by myself. That's right I stick my child, twice, every week. It's a little sick to say I'm proud of it but if I'm not proud or laugh at it I'll just cry. And well since it's not something I can change crying doesn't do a whole lot of good. Squeaker has gotten the hang of it too. She doesn't throw fits anymore she just whimpers and pleads for me to take it out before it's all done. I just give her whatever I can to make her more comfortable and say "As soon as it's done." It's rather heart breaking but again I have no choice. So I choose to just deal. At least by me doing the sticking and taking out we aren't dealing with fear and anxiety of other people. All Squeaker complains about is it hurting. She fights me a lot less than other other technician for anything she has had done. I hope it's because she knows that Mommy won't do anything without a purpose. That she can trust mommy to only to what she has to do.

As for the rest of the family. Trey is half way through is first semester of grad school and is
maintaining an A in both classes. It's been a little hard for Squeaker having daddy gone so much but she is adjusting. Well we both are, but we are having a good time finding balance. Trey is looking forward to being done with Calculus, so he can hurry up and forget it. Trey also started a weight lifting program, it's his way of trying to get fit. Whatever works.

Me? Oh well I mentioned the mommy time, working out, regular showers, projects. It's been nice. This week I saw the orthodontist for my check up. Things are going pretty well. Most of the major moving is done, now we are working on creating a nice arch and mid-line alignment. It will still be another year or so but it's been worth it. My last cleaning I had no cavities, no gingivitis, and they could floss without my gums inflaming or bleeding. And I am far from a great tooth brusher. Braces are making a great difference for me.

The braces have exacerbated a problem though. My 12 year old molars sit right up next to my jaw bone, always have. It's just how my crazy mouth was made. You should have seen the x-rays when my wisdom teeth thought about coming in. Anyway as my teeth have straightened and lengthened around my jaw one of my molars has been pushed even further up against my jaw. Which has cause the gum to be forced over the top of the tooth and inflame around it. Which leaves me chewing my own gum tissues. Yes folks that is as nasty as it sounds. So I saw an oral surgeon he would like to cut out the tissue shave off some of the jaw one and sew it all back up. He hopes that will be the fix. But he cannot give me a guarantee of long term results. I could have the same problem in as little another year. Joy oh joy. But being an awesome guy the surgeon decided since he cannot guarantee the work that he would not charge me. He really hopes it will be the fix I need but he'd hate for me to go through the expense just to have it find another treatment in a year or two. So I will be having surgery the first week of April. I'll admit I'm excited. This has been a bit of a problem since I was a teen and this last flare has been so bad I'm ready to try anything. The surgeon did give me an antibiotic to help calm the inflammation down and get rid of the infection. This infection is so strange all of a sudden I'll find some thing in the corner of my mouth and I'll spit it out and I'll think, "I didn't eat that?!" So strange. Oh well the worst will be over soon and then I have a shot at it being gone for good.

Holy Cow it's late. I need to catch some sleep.

Thursday, February 20, 2014

Mommy Time

It is so easy to forget about life besides being a mom. Now there are times where yes we must sacrifice just about everything for our kids. I've been doing it for about 3 and half years now. But recently I've realized not only is it healthy for me have some "Me" time but Squeaker can use the time without mommy.

I have to admit this is not the first time I've tried to spend time regular time for myself. This is probably for 4th or 5th time I've made a go at it. You know what I learned all those tries? That having regular "Me" time takes just as much commitment and effort as taking care of Squeaker. I have to set a time, a little bit of planning and seize opportunities as they come up. I can't assume that Trey will make the time for me to take a break or do something for myself. I have to let Trey know I need a break, or once Squeaker is asleep do something I want. Now this means there are times I choose to sew instead of doing dishes, or I take a bath when I normally would fold laundry. But I am learning that if I take the time out for me that somehow all that other stuff still happens. And not only does it happen but I'm happier about life.

So what am I doing now that is making me so happy? I started working out. I bought the Insanity workout program, new shoes, and I'm going to do the whole program. Yes it's brutal, especially since I'm still fighting a cold. But I'm in love. It's a great workout, I'm going to get fit, and it's just for me. Movement is essential to keeping my Fibromyalgia in check and well I've decided if I'm going to hurt it's going to be on my terms, not just because my body thinks it should.

To make the process complete I started using a new sugar scrub every other night during my after workout showers. This scrub alone could make you want to just hang out in the shower until all the hot water is gone. It smells great, feels wonderful, and is homemade.

Super Easy Sugar Scrub


1/2 cup of white sugar
1/4 cup olive oil
1/4 cup of honey. 
Mix it up.
Use middle and ring finger to scrub in circular motions on skin. 
Rinse.

Yup that is it. Now I has some honey that had crystallized. Which I softened by heating the container in a water-bath. Then poured it in the mix. So I made a batch big enough to accommodate the honey I had. Also since olive oil is expensive so I used plain ole' cooking oil. Placed it in an air tight container to store. When you want to use some in the shower take some out into a bowl. That way you aren't getting water into you big mix, and you have it ready whenever you want it. Just remember that the oil can make the tub and your feet slippery so be careful.

Saturday, February 15, 2014

6 Weeks

Six wonderful as healthy as Squeaker gets weeks. No extra antibiotics, no nebulizer, normal-ish sleep, it has been wonderful. Yes Squeaker still have IVIG which did not go great so we switched to at home infusion, lots of pain killers, and sleeping medicine was still administered but that is just life. Not having the extras... wow how refreshing. Especially since most of my friends and their kids have been dealing with colds, and stomach flu. It was really nice to not be the sick family for once.

This week the weather was just crazy. Up and down, rain, sleet, ice, snow, it played havoc on Squeaker's and mine's bodies. I have the start of an ear infection, it's still just fluid so hopefully some decongestant, hot salsa, anti-plauge, and garlic will clear it all out. Squeaker has a bad cold. Congested, runny nose, wheezy, happy, grumpy, sleepy, doc.... oh wait that's not a symptom that's a dwarf lol. Right now she is getting 8 nebulizer treatments a day and Advil 4 times a day. On top of the regular stuff. I have a feeling anti-biotic and a steroid are in our future. And as bumming as that is in general it will be the first time is 6 weeks. OH HAPPY DAY!!!

I do have to say that germ warfare is a lot harder when you are one of the germ carriers. 


Wednesday, February 12, 2014

Wear That You Care

I recently found out that immune issues are considered a rare genetic disorder. The Global Genes Project is devoted to looking for answers to all sorts of rare disease. But more importantly providing support for patients and families dealing with these disease that often have no name.

Also the last day of February is World Rare Disease Day. Of course there are events and even a gathering in the Washington DC. Well since we can't go to any other that (wayyy to many germs) I decided that we needed our own shirts for the day.

With a little ingenuity, a computer, a printer, the right kind of paper, and a few other things I came up with our own family t-shirts. The Zebra print is a nod to most doctor's training. They are taught that if is runs like a horse, and sounds like a horse it is probably a horse. Which means that if a patient has typical symptoms of say reflux, that's what you treat the patient for. Or if they look like they have the flu you treat them for flu. Most of the time this is a great rule to live by. But every so often if it runs like a horse and sounds like a horse it turns out to be a Zebra. People with rare disorders are Zebras.


Know someone who is a Zebra or want to show support? Make your own shirt using these graphics. Just remember when printing on transfer paper to set your printer to print in mirror image. Otherwise it will all come out sdardkcab (backwards).

ENJOY!!

Thursday, January 30, 2014

For All Medical Personnel

Your best intentions maybe only making things worse.

These are my observations but I'm sure many will agree. And these are geared toward the care of children but I'm sure they apply to a lots of adults too.

Do you say "This isn't going to hurt" right before putting a needle in them? If you do STOP. It is a lie! And you know it! If you here a co-worker say that phrase please tell them to stop. Yes on occasion a needle stick may not hurt but that is what 1 in 1000? If you tell a child it doesn't hurt you have taught them to either not trust a nurse or not trust their own bodies. I'm not sure which is worse.

Have you ever said the phrase, "Oh it's not that bad." Excuse me? You don't know how this person feels. We all feel pain differently
and if the patient is scared it just makes everything worse. Compound that with a medical professional who doesn't seem to care (yes that phrase says you don't care) it's just an awful thing. This is far more important to those who can't communicate, especially children.

Please stop saying "All done" when you aren't. If you are dealing with a multi step process don't say "all done" until it is actually all done. Say something to the effect of "that is done" or "getting there." For a lot of people this may not be a big deal but it is HUGE for my child. "All done" means "all done." If you then go on to stick her with something else or put another probe on her she loses it. It will take a while for her to calm back down to a point where we can proceed. 

Do you smile? I know and understand that medical professionals are over worked and underpaid. That you work very long hours, are away from your family, take out MASSIVE student loans that take almost your entire life to pay back, and you deal with people at their worst all day long. But please, please, please take a moment to smile. It lets us as patients or family of patients know for that moment you are our doctor. You care about who we are and what we have to say. Even if you have 50 billion other things going through your head. For two minutes you are ours. That is what a smile says. 




Please do keep trying your best. I am very happy that we have had more good experiences than bad ones when it comes to doctors and nurses. So hopefully these observations can cut down on the bad experiences for others. As much as we all love doctors and nurses, sadly seeing them is usually not fun.

Saturday, January 18, 2014

It All Must Go

Growing up Mormon big families are normal. I'm #4 of 5 and Trey is #5 of 6, and we both wanted 5 kids when we got married. We had planned to have kids about 2-3 years apart. Which meant we were going to save baby clothes, toys, and gear. As we gathered items for Squeaker over the years I would carefully store items in totes. Marked by size, and perfectly stacked in closets or under beds. Over the last couple years I've slowly been giving some away and selling some, because we had a lot! Especially when it comes to clothes. Since Squeaker has this thing against growing she often spend 2-3 seasons in the same size. Which means new clothes for each season. There is just so much stuff!!!! And as each problem comes up with Squeaker's health I feel further away from another child.

Two weeks ago I opened a closet to get some sewing stuff and saw the blankets that my grandmother made for my children. She made them when I was a teenager, long before her death. My grandmother made 5 blankets for each of my brothers and me. I had planned on giving one to each of my children. So I opened the closet and there were the blankets, staring me down and begging to be used. A wave of sadness came over me as I thought, I may never use them. About 10 minutes later I realized I could very easily give them to Squeaker for her children. The legacy would live on.

Then about three days ago I started going through clothes to sell for consignment. That was it I broke down and started to cry. I love Squeaker with all my heart and wouldn't change her one bit. I will also be very happy if she is my only child. It still hurts to come to grips with the idea that most likely my family will be much smaller than I had dreamed. Then there is all this baby stuff. Just sitting here mocking me. A toddler bed, toys, a bouncy seat, blankets, clothes, bottles, shoes, cloth diaper, baby gates, all these things just sitting there for who knows how long. So I decided that was it, "It all must go."

Sure there is still a chance we will have more kids. It's not completely out of the question. The
emotional stress this stuff is causing it just not worth keeping it. I would rather spend the money and replace it in a few years than be bogged down for years. With the consignment sale coming up I'll be able to get rid of some of the bigger items for cash. What doesn't sell or isn't worthy to sell will be donated.

I am keeping the heirloom and special items. The blankets friends have family have made, holiday outfits, special dresses, and anything frog :). It is all packed away nice and safe, and then of course anything we are using now or what Squeaker will grow into is nice and safe. The rest is sitting in a pile in the school room. This next week I will be going through everything, organizing for the sale and boxing up stuff for give away.

It has been extremely eye opening about the pain mother must go through when having troubles conceiving or adopting. I just caught of glimpse of it and I was miserable. I also am blessed that I can physically liberate myself from that anguish. I'm sure I'll still have emotional days about it but this will most certainly help. And I have to say I love having almost two whole closets emptied.

Wednesday, January 15, 2014

Infusion Fail

  In December the day after treatment Squeaker was grumpy, groggy and had terrible stomach pains. We called the Immunologist's office and let them know. These were not good symptoms for Squeaker to be having. It meant she was having a delayed reaction to the infusion. The nurse talked to the doctor and decided to change the infusion protocol and see how Squeaker did.
    A week and a half later Squeaker was on steroids and antibiotics for a cold, sinus thing. It wasn't fun but it was nice to have the extra protection while we traveled to see family for Christmas. Squeaker did great with all the travel, and managed to not pick any other bugs up.
   January 7th we had our second infusion, using the new protocol. It went really well, not nearly as rough on Squeaker. A little longer but she was happy the whole day, except for the part where they had to stick her twice. But otherwise infusion was just fine.
   January 8th turned out to be awful. The grumpy and groggy came back, which on it's own is pretty normal, but then it hit. The vomiting, just as Squeaker was passing out to sleep. Up came everything she ate that day. And I mean EVERYTHING!! Undigested chunks of mac&cheese, fries, chicken, bread, mucus, orange juice, just *shiver* everything. I have no idea where she stored that much inside her little body. But by seeing that things were undigested meant that Squeakers stomach was paralyzed. Paralyzed stomach is one of the worst things we have to deal with. It can last anywhere from 12 hrs to 7 days was our longest. When it happens you have to watch everything she eats. Foods have to be simple and easy to digest. Lots and lots of fluids and you have to be careful how much she eats, even if she is starving. The only way to know that it has passed is to feed Squeaker something heavy and pray it doesn't come back up. Squeaker never threw up again but the pre-vomit cough was still heard for three days after.
   Of course I called the nurse about this. She talked to the doctor and instantly it was decided that we were no longer going to be infusion therapy. We will be trying SubQ next month. SubQ is short for Subcutaneous Therapy. It is where instead of using and IV to administer the medicine it will be injected just under the skin so slowly dissolve and be absorbed into the system. 

Upsides To Sub Q
Doses are smaller. There are less reactions to SubQ especially in patients like Squeaker that doesn't tolerate the IVIG well.
More balance protection. The ups and downs of SubQ are almost nonexistent.
It's done at home. No more traveling to Birmingham at 6am.

Downsides to SubQ
It's done at home. A nurse will come out to teach us how to give Squeaker her shots. Oh fun! NOT!
More balance protection. It's more balance because it's more often, we are going from monthly to a weekly treatment. Blech.
Doses are smaller. Well maybe this isn't really a bad thing. It just makes me feel like if I screw up I've really screwed it up.

Boy the things parents do for their children.