Humilty

Trey's Grandmother sent us a Christmas card with a wonderful poem in it. The poem reminded me just how lucky I am. Squeaker is failing majorly in the sleeping department but I have a nice warm house, and a comfortable bed/couch to sleep on.


T'was the night before Christmas, he lived all alone,
in a one bedroom  house made of plaster and stone.
I had come down the chimney with presents to give,
an to see just who in this home did live.
I looked all about, a strange sight I did see,
no tinsel, no presents, not even a tree.

No stocking by mantle, just boots willed with sand,
and on the wall pictures of far distant lands.
With medals and badges, awards of all kinds,
a sobering thought came to my min.
For this house was different, so dar and so dreary,
the home of a soldier, now I see clearly.

The soldier lay sleeping, silent, alone,
curled up on the floor in this one bedroom home.
The face was so gentle, the room in such disorder,
not how I pictures a United States Soldier.
Was this the hero of whom I'd just read?
Curled up on a poncho, the floor for a bed?

I realized the families that I saw this night,
owed their lived to these soldier who were willing to fight.
Soon round the world, the children would play,'
and grownups would celebrate a bight Christmas day
They all enjoyed freedom each month of the yea,
because of the soldiers, like the one lying here.

I couldn't help wonder how many lay alone,
on a cold Christmas Eve in a land far from home.
The very thought brought a tear to my eye,
i dropped to my knees and started to cry.
The soldier awakened and I hear a rough voice,
"Santa don't cry, this life is my choice;

I fight for freedom, I don't ask for more,
my life my God, my country, my corps."
The soldier rolled over and soon drifted to sleep,
I couldn't control it, I continued to weep.
I kept watch for hours, so silent and still,
and we both shivered from the cold evening's chill.

I didn't want to leave on that cold, dark, night,
this guardian of honor so willing to fight.
Then the soldier rolled over, with a voice soft and pure,
whispered, "Carry on Santa, it's Christmas day, all is secure."
One look at my watch, and I knew he was right.
"Merry Christmas my friend, and to all a good night."

By Lance Corporal James M. Schmidt



In our family military service is abundant.
Trey's Grandfather- Army Air Corps- Air Force
Trey's Brother Rich- Army
Trey's Brother Lee- Navy (currently stationed on a air craft carrier and will not be home for Christmas)

LR's Father- Marines
LR's Brother Alan- Navy
LR's Brother Shwaa- Army (active duty but stationed state side)

That's just in recent generations. To all the families to sacrifice their loved ones being away, an of course to our soldiers both past and present,

MERRY CHRISTMAS!

The Pumping Diet

Recently the one of the best people in the world, Jenna, had her first baby. Jenna is one of the best people in the world because she introduced me to Trey, and helped set us up on our first date. Jenna's little boy was born 8 weeks early I believe and she has been pumping breastmilk for him. Which is a noble and very difficult pursuit. I know I did it for 14 months. It takes a certain kind of crazy to pump breastmilk hence why most people don't do it when nursing fails them. I'm so proud of Jenna for being as crazy as me and to help I'm posting the diet I used to help keep my milk going.

Water! 2 quarts (8 cups) is what is recommended for the regular person, for nursing and pumping moms we are talking closer to a gallon. Yes that is a lot. I suggest investing in a nice water bottle that is easy to use one handed so you can just hold it all the time until you get used to drinking that much. Once you are used to your new intake level you will seek it out a little bit. The downside is you will have to go to the bathroom more. Especially as you are trying to build up your breastmilk levels water is crucial.





Meet your new favorite food- Oatmeal. Oatmeal is a fantastic source of whey which builds milk supply. Now oatmeal as a cereal
is best. Rolled oats, steel cut, and flavored packets all worked the same for me. Oatmeal cookies and oatmeal cream pies were a great desert too.
 

Yummy, green, and great for milk supply it's Avocados.
Fresh, sliced, creamed, or even as guacamole, eat up and enjoy. Some woman it takes 12 hours to see improvement others its a day or so. Either way all those healthy fats should help your system make some wonderful food for baby.

Are you ready to go nuts? Well try some almonds on for size. That's right almonds can help with production too. Grab a handful as a snack or have a smoothie made with almond milk. Yes you can even get the chocolate almond milk, it will still work. Oooo how about some sliced almonds on a salad, I'm starting to get hungry. :)

Now that you are sick of water how about something new to drink, Ovaltine. Now it has to be the name brand on this stuff. I have yet to find another brand that uses whey in the their ingredients. And since whey is what we need to increase supply well the other brands don't do any good. You can use the original malt, malted chocolate or milk chocolate. They all have it. It's winter time so make your hot chocolate out of Ovaltine. A yummy treat with a purpose.

Not a fan of Ovaltine pick up any brand of Whey Protein Powder. Add it too your milk shakes, mac and cheese, smoothies, or just mix and drink in milk. Whey Protein Powder maybe easier and cheaper to find depending on where you are. Or maybe your significant other once was a body builder and there is still a jar sitting on top of your fridge. Open it up start using it.

Still want/need more? Try these supplements, Fenugreek, or Malanga. Fenugreek is cheaper and a little easier to find. It will be at most heath food stores. It can make some people smell like maple syrup. But there are worse things in the world. Malanga is a little harder to find and tends to be more expensive, it does tend to have a greater results. The choice is up to you based or your needs and what you can do.

 When you are pumping make sure you over pump. Milk is based a lot on supply and demand and since pumping is not nearly as effective as nursing you have to trick your body into making more. So once it looks like you are empty and nothing else is coming out leave the pump on for a couple minutes more for the extra stimulation. Trust me you'd rather have too much hanging out in the freezer for a growth spurt than not enough.




Lastly snuggle. Carry, hold and snuggle your baby a lot. Even if
you aren't nursing having baby close can help keep your body in tune with baby's needs. Not to mention it just fun to hold those squish little ones.



Okay now to put it all together this is what a normal day looked like for me.
Breakfast: A giant bowl of Oatmeal. usually about 1 cup or oats. Cooled down with a little Almond milk
Snack: Smoothie with Whey Powder
Lunch: Whatever we had planed
Nap-time: Snuggling with Squeaker
Dinner: Quesadilla with Guacamole
Snack: Oatmeal Cream Pies, Almond milk with Ovaltine

That was what I did at the worst of times. During the good times I wasn't nearly as strict. I got to a point where I only pump 2-4 times a day. I just made sure the fore milk (the thin watery stuff) was mixed with the hind milk (the thick creamy stuff). That way Squeaker was getting good balanced milk all the time. Which when a child is nursing happens normally.

As a side note I used the 8,8,8 rule for milk storage
8 hours out of the body
8 days in the fridge
8 months in the deep freeze
I pumped directly into the bottles Squeaker drank out of. Only if we were traveling did they not make it into the fridge right away. Then if they had been there for 6-7 days I would put about 15 oz into a glass canning jar and put it in the bottom of our deep freeze. There it would stay until needed, or time for rotation. Once frozen and then thawed milk cannot be re-frozen. Also NEVER EVER EVER harshly shake breast milk. It will speed the break down of all that is good which means less for baby.

Hope it helps!

Not Too Shabby

Today Squeaker had her first infusion therapy. (If you have forgotten what infusion is you can read here, here, here and oh yeah here.) And honestly it couldn't have gone much better. Of course she kicked and screamed while they put the IV line in. She hated having the syringe attached to IV line to open up her veins. After about 30 minutes they took off the syringe and put on the IVIG. Squeaker was able to take it at full run which meant that the vial was gone in a mere 2 hours :)

Then a 30 minute saline bag to wash out the line, 30 minutes of observation and off we went.

Talked to our primary care doctor today as well and it looks like we should be able to get infusion moved from Birmingham to Huntsville. That will save 1.5hrs drive each way. Yes I am excited about saving the gas money but not having to wake up at 5:45 to take Squeaker to receive her treatment.

Sleeping

Finally after two weeks I thought we had gotten back into a good routine. But Squeaker had other things in mind, and I tell ya 3am is too early for anything.

About two weeks ago Squeaker had a sleep study. The night started out okay. She fell asleep pretty easily and then all the electrodes went on. Yes she slept through it. The tech waited to put the nose sensor in until Squeaker was in a deep sleep. Within seconds Squeaker was awake kicking and screaming. I calmed her back to sleep and the tech tried again. After four tries Squeaker was stressed out had realized all the other stuff stuck to her and wanted it all off.
Squeaker kicked , screamed, thrashed and begged for it too all be over for over an hour. It was very rough and sad. At 2:30 am the doctor ordered the test terminated. Off came all the electrodes and straps, then Squeaker ran to the car in excitement to go home. 3am and we were home. It was way too early to be home :(

The other night Squeaker just had a rough night. It took a long time for her to fall asleep and she tossed a lot. I had no idea what was happening or how to help. So I just snuggled up and went to sleep. 3am and Squeaker woke up and never went back to sleep. It was way too early to be up.

Kool Aid Play Dough

Here's the recipe:

1 cup flour
1/2 cup salt
1 package Kool-Aid (unsweetened)
3 tbsp oil
1 cup boiling water

Put dry ingredients in a bowl. Add oil, then boiling water. Mix with a wooden spoon as much as you can, and then use your hands to knead it all together. Have some extra flour handy so you can add it if the dough is too sticky. Warning -- the dough will be hot (duh, boiling water) so you might want to have some cold water running nearby to cool your hands.

I used two packages of Kool-Aid for more vibrant color. It makes it smell yummy, instead of doughy.

This came from Nell my sweet sister in law. I LOVE IT! Pretty easy, smells great and when stored in ziplocs bags or containers it lasts a long time. Squeaker has been playing with the first set I made for about 3 months now. :)

What a Month

 We fought and beat two rounds of bronchitis. More importantly we have had a few "healthy" days in there. Which we just went out and enjoyed greatly. We taught Squeaker how to gather pecans, do split jumps and to say "I love you more". Sure our month was a little hectic but a lot of fun.

In other news I talked to the Immunology Insurance Coordinator, Jan, today and well she wasn't happy. Apparently the doctor never told Jan Squeaker needed to put through for IVIG therapy. So the process was never started. Jan told me she would get on it today and put it through as a rush order so hopefully we can have our first infusion in the the next couple weeks :)

On Thursday we have a sleep study for Squeaker. I was hoping to do one at home but since we are

seeing a new doctor he wasn't to try the hospital first. Our new sleep doctor, Doctor Roy is a fun guy. Not only is he best friends with Squeaker's Pulmonologist but he is open to real life. He didn't care that Squeaker and I still co-slept, and that if I say Squeaker is having hard time sleeping then she is. So if the hospital sleep study comes back normal we will do other tests. Wahoo! I love doctors that believe me.

Um yup that's it... short and sweet because well I want to sleep :)

I feel like crying

One of the most challenging things about having Squeaker be so sick is I can't be the mom I wanted to be. Yes, this is true of almost every mother because kids come with their own challenges and you have to adapt. It's also true that I am still the mother I wanted to be in many ways. I am kind, loving, fairly patient, interactive, and I truly enjoy my child. Which in the grand scheme of things are more important than being that mom who lets their 3 year old use a bottle, has to ignore the screaming to get something done, or who uses the TV to keep her sanity. But today one thing hit a little closer to home, food. Mostly the need for kids to have healthy food.

I saw 4 posts today on Facebook about healthy food for kids. Three of them just made me sigh and go, "If only I could."  Then one comment almost put me in tears. It was not made maliciously nor was it even made toward me, and I love the person dearly who wrote it. Today was just an pretty rough day this hit me hard. It didn't help that I was feeding Squeaker her second burger patty of the day. 


"...Nutrition can fix almost anything. Food sensitivity or parasites are a great starting place."

 

This is the mentality I was raised with. Raising a family of athletes my mom worked hard to make sure we were getting the right amount of carbs, protein, fruits, and veggies in our diet. She taught us about carb loading the day of a race. That during winter and off seasons our portions needed to be less so we could stay healthy. Mom would have loved for use to have fresh oranges everyday during the cold Maine winters but it just wasn't possible so she made sure we took our vitamins. Of course we still got sick and from time to time would need antibiotics, a daily yogurt was added to our diet to help keep good bacteria in our system. Good food can do great things, I know that and I wanted to be a healthy food mom.

We started out that way too. I pumped milk when nursing wasn't an option, I made baby food from scratch, and Squeaker didn't have sweets until about 18 months old. The reason we started introducing sweets was because they tend to be high calories in little spaces. And we needed those calories for weight gain. We still do.

So yes I am here whining about the fact that Squeaker is under doctors orders to eat junk food. She

has free reign over chips, crackers, cheese, ice cream, cake, frosting, hot dogs all those things most kids have to keep out or to a minimum. Before you start to freak out we do feed Squeaker healthy food. She actually loves it. Fruits are her favorite, follow by pasta with sauce. She will eat mostly anything we eat. All in all she has a healthy relationship with food, and enjoys lots of flavors and textures. But we still struggle with weight. All that junk food makes a difference, and every ounce counts.

Now you maybe thinking that if we dumped the junk food and gave Squeaker immune boosting foods it would make her healthier. Boy oh boy do I wish it was that easy. Since Squeaker's immune system doesn't know what to do you can give it good or bad stuff and it will do the same thing. Her immune system will just go along not doing much. Yes it is frustrating.

Here I am once again admitting I'm not the mom I desired to be. It's hard and yes it makes me want to cry. Then I look at my sweet sleeping Squeaker (it took 2 hours for her to pass out tonight) and remember I AM the mom I need to be.

Say "Thank You" Tonight

It's fall. The weather is cooling off the bugs are dying, the leaves are turning colors and of course Squeaker is sick. We are starting fall out with a bit of bronchitis. I call it a bit because it was caught fairly early. Squeaker had just been a little wheezy and acting "off" when we had a check up with the pulmonologist. They listened to her and heard some crackling in her lower right lung.  Yeah... great way to start fall. Oh and she has lost a pound too, 24lbs again :(

It is now 10 days into a 14 day antibiotic and 3 days into a 5 day oral steroid. We are still struggling with wheezing, feeling icky, coughing, and sleeping. This is on top of a prophylactic antibiotic, inhaled steroids, Advil, and albuterol. Squeaker is just taking a long time to get over this. This could be a very long winter.

In related news. More immunology test results came back. Well it's not good news. Squeaker does not make enough antibodies to support her system. For example they gave Squeaker a pneumonia vaccine to see how she would react. Before the vaccine Squeaker was considered "safe" from 3 of 17 strands of pneumonia and after the vaccine she was safe from 4 of 17 strands. Normally after 2 vaccines you are fully protected from all 17 strands.

These results combined with the last set make it clear that more aggressive therapy is needed. Once again they are going to try and get Squeaker approved for infusion therapy. The hope is that after a few months not only will Squeaker not be sick but the therapy will teach Squeaker's immune system how to work. Her system is there is just doesn't work right. We just have to get her approved by insurance.

As frustrating as it is to get Squeaker approve for infusion therapy I get why insurance doesn't want to pay. That stuff is expensive! Per gram IVIg is twice the cost of gold, and the bigger Squeaker gets the more grams she needs.

Why is it so expensive? Well immu-globulin, what makes IVIg, is a very small part of our blood. It takes 8 pints of blood to make 12 grams of IVIg. At her current weight Squeaker needs 23 grams of IVIg every month at a cost of $2070. To make those 23 grams it takes 16 pints of blood, or 8 pints of plasma every month.

Want to figure out what you would need?
Take your weight in pounds     150 lbs
Turn it into Kilos (times .45)    67.5 kilo
Times 2 for the grams needed  135 gram
Divide by 12                             11.25
Times 8 for blood donors          90 blood pints
OR
Times 4 for plasma donors       45 plasma pints
Price per gram                           $46
Total price for medicine            $12,420

Crazy huh? One more thing to add to the crazy. A healthy adult can only donate 6 pints of blood a year. Now a healthy adult can give up to 100 pints of plasma a year.

The point of saying all this is to let the world know. I'm not trying to throw a pity party or say woe is me. Each and everyday I am thankful for my Squeaker and what health she does have. We still get to do a lot of things, and have a lot of fun. But tonight I encourage everyone to make sure you say "Thank You" for your children and what health they have. For the joy and fun they bring into your life. Be thankful for it all.

Then tomorrow wake up and find a place where you can donate blood or plasma. Get some friends together and go donate. There are many people in the world who use it. Hopefully soon our little Squeaker will be one of them.  For the seven month trial they want Squeaker to do she will use up to 105 pints of blood and/or up to 53 pints of plasma. So get donating!

The Upside

With Squeaker's crazy sleep schedule I'm awake at odd hours and for long periods of time. A lot of times I'm too spaced out to do anything. But there are nights where I'm wide awake listening to Squeaker breathing or just waiting for a freak out of some kind. During that I'm I like to be productive. I'll research different school things, or understanding a diagnosis, this is when a lot of flash cards get made :)

This week is Retro's 14th Birthday and he is having a Minecraft party. He or my mom... not sure who decided that they should play Minecraft Bingo. I don't know if you have ever googled that but it comes up with the online Bingo game, or a Bingo card you can use while playing the regular game. Nothing for a group game. Mom was not excited to make a new game from scratch so I offered to do it. Especially since yesterday was a sick day and I knew I'd be up with Squeaker.

After spending no less than 10hrs on this project I figured I had better share it for several reasons. I want recognition. I'm really proud of this one and it was hard to figure out what to use since I know nothing about the game. So yup I looking for pats on the back. Secondly as the saying goes "If I can't find it online, then it must not exist." Online research is one of my super powers. And if I couldn't find a good Minecraft Bingo game it must not be out. Minecraft parties are growing in popularity and another activity for already stressed moms would appreciated. Bingo is a great activity for parties and play dates, it's simple straight forward and it doesn't take an adult to run it. A child/teen with and understanding of the game and some reading skills can run it. Giving the adults a chance to heaven forbid get something else done :)

It's in two files. The Master Sheets, and Bingo Cards. There are 20 Bingo Cards.
***Please make sure you click on the links to print the cards. Not just the pictures.***
Update 2024 *** The files should be available to view and print when you click on the link. I will not be granting admin access please do not request it. This account is currently no monitored frequently. Every year or so I have to update the security settings sorry if this causes any inconvenience for your party.***

Best Kept Secret

I'd hate to say it but the government (federal and state) has been keeping a really big secret from you. Big surprise, right? Well you maybe surprised to hear that they are keeping affordable children's health care a secret.

It's probably not intentional because they want kids to have affordable health care otherwise the program wouldn't exists, but it's not like they do a whole lot of advertising. We've all heard of Medicaid for poverty level families. There are many people who don't qualify for Medicaid because they make too much. But they either have a job with no benefits or like us can't afford the jump in premium.

As we were preparing for Squeaker's arrival we were looking at the cost of adding her to our insurance plan. Trey's work offers pretty good medical coverage, the only problem with adding Squeaker would take us from an employee+1 plan to a full blown family plan. A premium jump of about $200 a month. Now the family plan covers up to five kids I believe so for having two or more children it's a great premium. For our budget (which still included utilities for the house we hadn't sold yet) we couldn't afford it. I started looking into state and federal aid but we didn't qualify for any of it.

One day Trey was talking to a friend, Scott, at work and explaining our insurance conundrum. Scott jumps in and says, "Apply for All Kids". His daughter was diagnosis with a heart condition shortly after birth and one of the nurses suggested they apply for All Kids so they wouldn't be stuck with horribly large medical bills. They had never heard of the program but of course Scott filled out the paperwork and a year or so later when their daughter needed heart surgery

it cost them $300. Yeah you bet we applied.

For three years All Kids as been our saving grace. When we needed a nebulizer we had one, fully covered. Extensive blood tests covered. X-Rays, CT scans, Ultrasound, Barium Swallows, Ear Tubes placed, teeth removed a small copay. Then of course all the medicines $5 a piece! Even as cost have gone up it is still far cheaper than Trey's work plan.

Every time we think about applying for a management job we look to see how much the cost of living is. Including if the state has a supplement insurance program and it's requirements. Most states only have income requirements, paired with the number in your family. Including unborn children. Some of them though have exceptions for children with high medical needs, or mental
impairments such as autism.

Take a look and see what your state offers.
http://www.insurekidsnow.gov/

Tex Mex Casserole

I've been meaning to post this for a while because it is really good, and reheats REALLY well. The original the original recipe was called Skinny Tex Mex. I'm not sure I agree with that statement since noodles aren't exactly low calories. Most of my adjustments to the recipe came out of what I had in my pantry. That way if I have a whole in my menu plan I can whip this out :)

Ingredients:
1 can 10.75 ounce Campbell's Healthy Request Tomato Soup
1 Cup Water
1 cup chopped onion
1/2lb to 1 lb lean ground beef (90% lean) (or any other ground meat)
1 10 ounce can Rotel Mild tomatoes
1 15 ounce can Black Beans, rinsed and drained
1 15 ounce can Sweet Corn, drained
1 12-16oz box whole wheat penne pasta
½ tsp salt
½ tsp pepper
1 tsp garlic, minced
Optional: 1/2 Cup Cheddar Cheese

Instructions

1) Preheat Oven 305 degrees F. 

2) Spray Casserole dish or 9x13 pan with non stick spray and set aside. 

3) Cook Pene Pasta

---- While the pasta is cooking you can make the rest of the meal.

3) In a skillet (or pot) brown meat adding in garlic and onion. 

---- You can use pre-cooked meat just warm up in skillet with garlic and onion)

4) Drain any liquid out of the meat and return the pan to low heat

5) Add the Rotel Tomatoes, water, salt, pepper, tomato soup and stir well. 

6) Make sure your pasta is drained and then mix the meat/sauce mixture with the pasta. 

7) Let sit on low heat 

8) Rinse the black beans, then add corn. 

9) Pour Noodles into the casserole dish

10) Spread Black Bean/Corn over top the noddles. 

11) Sprkinle with cheese if desired. 

---- If you are going to freeze it stop right here. 

12) Bake 15 Minutes

Family Home Evening Charts

Family Home Evening (FHE) is a program in the LDS church to help strengthen families. You can read more about it here. But the basics are the family that prays together stays together. And to help make sure the whole family is involved we make these cute little boards or charts so we can keep track of who is supposed to do what.

Well Trey and I decided it was time for a FHE chart. I want a nice wooden one but I could find one I liked. Which means I'm going to be designing and making my own, with character meant for our family. Until then I needed something. I went searching for papers and found some adorable ones at MeinLilaPark. Then I whipped these up.

Frog FHE Chart

 

Stars and Stripes FHE Chart

Grey FHE Chart

They print out on a standard sheet of paper. My plan is to laminate the sheet and use wooden clothes pins with our names on them. I'll post pictures of those once they are done. I was just to excited to get these done that I had to share.

You could also use magnets or once laminated you can write on it with a dry erase markers.

Have any ideas for other themes or patterns??

It's Medical...

I tell ya this just sucked to read. I'm not sure why since the day before I went over this information with the doctor and it was alright. I guess reading it in black and white just made it so real. Then I made a bad choice and pulled out her testing order sheet. I almost always just toss those out so I don't think about it too much. Put that day I pulled it out and looked at it....

 

This just sent me into worst case scenario mode and I had to look it all up. 

IgG Subclasses- Immunoglobulin G has four subclasses. Each with their own crucial roll but when all put together IgG makes up nearly 75% of Blood Plasma serum (the part of the plasma that isn't water). As part of the immune system the IgG helps kill viruses, bacteria, fungi, and neutralizing toxins. IgG can also pass through placenta to protect and unborn child while their immune system is still developing.

Mannose Binding Protein- is a lectin that is instrumental in innate immunity. I'm going to make you look those innate immunity because it's an article everyone should read. It's really fascinating. :) 

Post Pneumococal Titers- 6 weeks ago Squeaker was given a Pnumonia vaccine and pre-titers were drawn. They took the post titers so they compare and see what her body did with the vaccine. The last time we did this test it didn't look so great. It's actually what put us in the immunology clinic. 

CH50- Complement CH50 is a blood test which helps us determine any protein abnormalities and deficiencies in the complement system. This is the test that we have run no less than 4 times already and according to the doctor will be running a lot. Because even after a 100 times it being abnormal it can come back normal. 

AH50- Tests and measures alternate-pathway function of the compliment system. Another test that will probably forever be run.

Now for Factor B Antigen and Factor B Function I can't quite figure those out yet. I know they don't have anything to do with blood type. It specifically relates to the function of the B Cells in the immune system but I'm not sure how. What I do know is that Dr. Atkinson said it is the most common cause of and IgG deficiency, but the IgG deficiency it's exactly common. Yeah.. a common cause for an uncommon deficiency.

In other medical news:

Teeth 3 and 4 were extracted without a hitch. Since there are now no top front teeth Squeaker is having to have her food cut up a little more, but she is a lot happier not having rotting teeth in her mouth.

Squeaker has broken the 26lbs barrier!!! Our little girl is 26lbs and 36in tall. I LOVE seeing numbers go up!

We have begun potty training. :) I know that's not entire medical but what has stopped us in the past was as soon as Squeaker would sit down everything would squish and she wouldn't be able to get the muscle to work. In the last few weeks it's all started working.. HOORAY! She still can't use an adult sized potty, even the potty seats are too big for her. So when we go out she needs a diaper, at night time and to go poop. But when we are at home she will wear underwear and even pants over the underwear and be able to go in her potty bench. We haven't had a single accident. Of course Squeaker has had great bladder control and awareness since she was bout 9 months old we just couldn't get the muscles to work.

Lastly this week we have been dealing with some stomach issues. Trey and I are thinking she picked up a bug somewhere and stomach just decided to stop working instead of dealing with it. It does that from time to time. It just means our days are filled with lots more fluids, bathroom breaks, and little eating. Night times bring stomach cramps, tossing, turning, overall sleeplessness. The upside is so far she's only thrown up once, and in general Squeaker is pretty happy. She is such a trooper :)

Just A Day

  As I sat down to update about the most recent in Squeaker medical I couldn't figure out how to do it. I just didn't know where to start. Although nothing really has changed... I think... it just seemed depressing to write about it. For the moment I'm just going to post about daily life. I'll save all the medical stuff for another time.

  Most mornings she wakes up and she immediately wants to go "outside pool water" I could be 5:30 in the morning and that's what she asks to do. I'm not joking she's done it. About 50% ehhh maybe 40% of the time I manage to drag myself out of bed and go outside with her (It will be less an less as fall comes) I try really hard to get her to eat something or play a little before we go out. That way I have a chance to wake up and stretch. If I can do that I don't feel like death and can really enjoy being with her. The last few days me waking up and moving just hasn't happened. Which has a lot to do with Squeaker not sleeping well. I have no clue why but she has been in uber cuddle and I'm going to lay on mommy mode. Which means I end up contorted, laid on, and smacked more than usual.

   Once done with breakfast or pool or whatever we are watching the puzzles come out. Well the puzzles were probably already out but we go back to them. Squeaker loves her puzzles. She is doing 24 pcs puzzles by herself now. The ones with little pieces... it's one of the few fine motor activities Squeaker will do consistently. One of the other activities she loves is her Cheerio book. We do that a lot too, which I really like. 1) Because what I'm supposed to do is well defined. When playing puzzles or reading the rules change. With her Cheerio book it's the same. 2) It involves food. Cheerios may not be high calorie but it is calories. 3) Fine motor skill work out. Have you ever tried to pick up one Cheerio at a time? It's fine motor skills at their best. Squeaker's occupational therapist loves that we have the book. 4) It travels well. I try to keep a bag of Cheerios in the diaper bag and I just have to grab the

book and no matter where we end up I have an activity and food for Squeaker.


  About 9:30 Squeaker goes in a wakes up Trey. Trey works from 3pm- 12am at a call center. Which means he doesn't get home until 12:30 and often isn't asleep until 2am. So yes I am an awesome wife and let him sleep, most days. If I am sick or Squeaker is more than I can handle I will get him up earlier to help out or even take over so I can sleep. I try not to do it a lot because I can nap later but some days it's just what has to happen.

  Okay we get Trey up at 9:30. Squeaker will grab Trey's phone and climb into bed snuggle up close and play a game on the phone while he wakes up. Often I will go in too and we will snuggle as a family. Other times I'll start dishes, cleaning, laundry or just enjoy the few moments of quiet. By 10am we are now all up and moving, or in Squeaker's case jumping. I swear she never stops.

  The next few hours are filled with trains, books, movies, music, tickles, puzzles, jumping, running, catching you name it we probably do it. Somewhere around lunch time we try to do family scriptures and prayer. It doesn't always work out but we do try. Then it's time for Trey to shower, shave, and dress for work. He leaves at 2:30.

  Once we say "bye, byes I love you" Squeaker and I head off to the bedroom for nap. Naptime can be a great time as any mom will tell you. I especially love it because I get to sleep in the big bed. See at night Squeaker and I sleep in the TV room. Squeaker is on couch and I have twin bed pulled up right next to the couch. My bed is comfy enough and it's much better than the couch, which I slept on for 2 years. But for nap time we sleep in the master bedroom in the big bed. The bed that has the 3 inch memory foam topper on it. The bed that assures minimal sleep smacking from my toddler. I do not understand why this set up works but it does. Night time in the TV room and nap time in the master. We tried several other arrangements and they were giant flops. So for now this is the way.

  After nap which can last from 1hr-3hrs. It's time for more play. It's pretty much the same as before. Even the requested to go play in the pool. Not that I can blame Squeaker we do have a pretty nice set up. We have a slide that goes into a little plastic kiddie pool. Those sit right next to a 6ft wading pool, which she loves to crawl/swim in. Honestly it's like having a mini water park. When we do get outside I will do some work in the yard or just hang out with my feet in the wading pool. After pool is the same inside games we did in the morning.

  If we do have errands often we will do them in the evening. Just to break it up, and it gives me a break from entertaining a toddler. Oh and it cause lots of running on Squeaker's end so she gets good and worn out for bed.

  Ahh bed time. This tends to happen around 9pm. I know that "experts" will say that is too late for healthy sleep. I'm my expert opinion they can eat their own books. I have read so many articles and things about sleep training, no cry sleep, early to bed/late to rise toddlers. I've also tried most of it, it just doesn't work for Squeaker. For a while there this kid just didn't know how to sleep at all, naps or night time. Now that we have some sense of schedule that works for our family guess what I'm keeping it. If the experts don't like that my child naps later in the afternoon and I let my child stay up until 9-10pm then they can come and wrestle her to sleep, cause more anxiety, stress, and breathing distress. I will NOT do that to my child.

  Okay rant over... About 9pm I give Squeaker her "yuckies". This is her sleeping med, an antibiotic, and pain killers. Depending on the level or tiredness Squeaker maybe out in 15 minutes, like tonight, or it may take an other 1 and a half. Sometimes I will do treatment to help Squeaker fall asleep, and other times it happens after she is asleep. I kind of leave that up to Squeaker. If she wants treatment she gets it, if not I'll happily let her try to doze off on her own.

  I'm sure you have noticed I have a lot of pictures of Squeaker sleeping. I bet most parents do, I'm just willing to share them more often. Getting Squeaker to sleep used to be a nightmare. And then keeping her asleep could be just as hard. I'm not talking about once and a while I'm talking nightly. I would be up at 1am holding her, rocking her, praying she would go to sleep. Other nights she would fight. I'd have to keep her in a bear hug for 10-15 minutes while she screamed, tried to kick, and I sang to her to keep Squeaker calm enough to avoid breathing distress. Those where just the things needed to get her to sleep the first time. These techniques would have to be repeated during the night. When Squeaker is sleeping in total peace I can't help but share that wonderful moment.

  As of now with a sleeping medication Squeaker still wakes a couple times a night but because the stress and anxiety have been taken out of it she will fall sleep much better. Most of the time it's just a matter of grabbing a bottle and rolling over. I often don't even remember these encounters, or I can't tell them from the dreams. But it does still disrupt my sleep cycle. Of course there are still other nights where it's really rough but we've gone from nightly battles to ehh twice a month. I'll take it.

  So after some sleep, you never know what your going to get. Squeaker wakes up between 6:30am-8am. The process will start all over again.

Flash Cards III

Did you know that action words are important part of language and speech development? I never would have thought it. It makes sense, understanding that there aren't just objects but actions. That opens up a whole new line of clear communication. Of course the reason I know this is because Squeaker needs help in this area. Action words continue to elude her almost entirely.

In an attempt to help Squeaker I made flash cards! This set has 40 action words. There are many more action words of course but this seem like a good start. ENJOY!

Action Words 1

Our Quest

We had already completed several things today. The cars were registered, a new therapy ball bought, and speech therapy was done. It would have been fine to simply stay home, play in the pool and take a nap. But there was a tale told, a tale of snow cones. Snow cones to be sold by a friends sport team at the farmers market just a couple blocks away. It seemed simple enough............

Before I knew it 2:30pm rolled around. It was time for Trey to leave for work. A normal enough thing but today Squeaker really didn't want him to go. She hasn't seen much of Trey because he's not been feeling the greatest so I've been letting him sleep in the last couple days. Squeaker had a major melt down just by Trey putting on his jeans instead of PJ pants. As funny and cute as that is I started to worry. Would my plan of snow cones work out??

Trey left and Squeaker was not happy so I offered to take her on a walk. I figured we could walk to

Once outside it hit me how warm it was. Okay for August in Alabama it wasn't too bad. 86 degrees and 69% humidity. Which for just being outside playing or doing small things it fine. I was getting ready to wrangle a stroller and a dog. It was going to be hot.
the farmers market. Well I had forgot one precious rule, don't mention the "W" word unless you are willing to leave right then and there. Even stalling it took a grad total of 5 minutes to get Squeaker dressed, Zelda on a leash and all of us with a stroller out the door. The only problem was the market it didn't open until strictly 3pm.

I started to walk towards the farmers market. Hoping it would take longer than I imagined. I walked as slow as Zelda would let me. 7 minutes... that's all it took. I looked at the time 2:42... the market

1.5 Miles Total

was just across the street. There was no way Squeaker was just going to let me stand around for 18 minutes until everything opened. We needed to keep walking...

Since Squeaker knew the market and the church it is held at I figured it would be best to go up a few streets, cross and go around as to not pass the church. If Squeaker saw the church I knew she melt down, something I was not ready to handle. I turned right and head up the sidewalk.

Come to a great place to cross. It was on top of a little hill so I could see oncoming traffic on both sides. As safe as that maybe it freaked me out a little. Why on earth was I trying cross a busy 5 lane road with a stroller and a dog. With no light to help or even a cross walk. Then I remembered if I wanted those luxuries I would have walk no less than 1.5 miles up the road. And of course I would have to walk all the way back down. In the heat with a dog and a stroller. Okay so maybe the 5 lanes weren't the worst thing. I did pick a good spot.

I waited just a couple minutes for a break in the traffic on both sides. With Zelda close on her leash and a tight grip on the stroller we ran. Clearing all the lanes with no problem. Walking down that road taking a left and walking up the road the market was on. We had perfect timing. Just as we came up on the church it was 3pm. WAHOO!!! Not waiting.

Then another bump in our quest, a sign, "No Pets Please". This was not here the last time we came by. I knew we wouldn't be long but I had nothing to do with Zelda. We had walked it's not like I could open the windows and put her in the car for the 5 minutes we would be gone. Squeaker was begging to get out of the stroller, it hit me, put the Zelda in the stroller. People do it all the time, it will keep Zelda from sniffing people or food. Getting in the way or tripping someone. Just as I was settling Zelda into the stroller (she is not a fan), a volunteer came up and

offered to take her while I shopped. I asked if we could give the stroller a try first. The volunteer said it was perfectly fine.


I asked Squeaker to lead the way, just so see if she would want to look at anything and I could keep a hand on Zelda so she didn't jump out. Squeaker instinctively knew where to go for our Snow Cones. A short wait and 4 dollars later we had two large snow cones. We ran into a neighbor and talked for a couple minutes but we couldn't stay long. We had to get home for the precious window of nap time.

There was no going the long way on the way home. We came right out onto the street we needed the cross, 5 lanes again. And this time I didn't have the same vantage point. I found a spot and ran. It

Our worn out Zelda

wasn't as clean of a run this time. Thankfully the car in the last lane saw me and slowed down so I didn't have to worry about them. Another few minutes and we were home. VICTORY!!!

Soon after getting home we finished our treats and curled into bed for a nap with colored tongues. Some time you can just forget about the all the medicines, appointments, and illness and just do things like everyone else. What fun we had. :)