DAY OF LIFE 146

Today is Friday...

Overall, it was a pretty low-key day...

I am not as refluxy today as I have been - which is a good thing...

Feeling super thankful to be alive!!

DAY OF LIFE 145

Today is Thursday...

I had a pretty good day..

I still have this danged cold, but it's not as bad as it was a few days ago..

Today, the Physical Therapist came to visit me and "tested" me..

She thinks that my neck strength is very much like an "new born" baby's would be, but the lower half of my body muscle (legs, etc..) are very strong and tight..

I am a mystery for sure..

My "translocation" has everyone "wondering" what life holds for me...

She gave my mommy and daddy some great information on "how" to help me develop to my full capacity...

I was doing really well on my non-refluxing, but after she left, I started to "wretch" some..I think some of the movement "moves" things around in me, and I can't help but reflux..

I had quite a bit of "older" blood in my g-tube today too..

My mommy & daddy know that I am bleeding "somewhere" in my body, but don't know "where" and they don't want to take me back to the hospital for more testing...

They wonder if I could have bleeding ulcers?

They will talk to my Doctor again about this, but thank goodness my Doctor is "conservative" when it comes to testing..

I had my first FULL submersion bath today (since my g-tube surgery.)  All of my other baths have been sponge baths because we had to wait 2 months for it to heal.

I didn't like it..not one little bit..

It's kind of a bummer too because I used to LOVE baths, before the g-tube went in...

Overall, it's been a great day and I am so thankful to be alive and growing!!

I am very blessed indeed!!

DAY OF LIFE 144

What a difference 24 hours makes!

My g-tube has QUIT leaking..my mommy & daddy were able to fix it withOUT taking me into the Doctor..this is great!!

I still have a cold, but I am starting to get better...

AND..

My reflux, wretching motions are almost non-existent...

This is a great thing for my mommy & daddy to see!

I spent a lot of time with my Nana today as my mommy and daddy had work they had to do...

Overall...it was a great day!!

DAY OF LIFE 143

Today is Tuesday and I cried a lot of the night.

My daddy awoke to find me super COLD and saw that my g-tube was leaking a lot of liquid out of it and I was soaked from the formula.

This meant the day started crazy because my daddy has a meeting and my brother and sister have to get ready for school and I had to be fixed so I would quit "leaking" and WE ARE SO THANKFUL THAT NANA IS STILL HERE..she is so helpful and saves our bacon every day..

My mommy fixed my tube but didn't fix it good enough because I ended up getting soaked 3 more times today.  It's really important that they NOT leave this on my skin because it is "formula" but it has "stomach acid" in it too, so it can eat my skin if it's not cleaned off right away.

For some reason, she would pull the water OUT of the inner balloon and put more back IN, but it wasn't "holding" the tube in tight enough to stop the leaking.

So..she called her new best friends (my Doctor's office) and they suggested to do what she had already done and then bring me in tomorrow.

So, she tried it one more time tonight & prays that it works..I have to eat and if it's all leaking "out" then, I am hungry and she is constantly cleaning, taping, un-taping, re-taping..(well, you get the idea..)

She is very thankful for the g-tube class that the bigger hospital offered her while I was there..this was very helpful..

I am also still thankful for tylenol and ibuprofen..

These help me rest and get better..

My mommy had a crying melt-down tonight on my daddy because I keep her very busy..sometimes she feels a little overwhelmed and just needs to let it out..

Thank goodness that my daddy is a patient guy..he is a good daddy...

We are all keeping the faith for my total wellness..every single day...

DAY OF LIFE 142

Today is Monday.

I had a very hard night & I struggled to breathe all night long.

My mommy was concerned because I had a bluish tint around my mouth and I was breathing "in" and "out" like I had just ran a marathon.

I was also still coughing a hoarse "dog" bark cough.

So...we went to see my Doctor.

(I almost wonder if my Doctor thinks my mommy is HYPER-SENSITIVE and worries too much, but she would rather be safe than sorry.)

It took about 40 minutes to get me packed up and ready to go and then when we got to the Doctor's office, I was calm.

The tylenol kicked in and I wasn't breathing fast anymore.

My mommy couldn't believe it as I had struggled ALL NIGHT LONG and now a trip to the Doctor's office has cured me.

The Doctor did listen to me and heard "airway" congestion NOT "lung" congestion.  I always have airway problems, and the Doctor said my "cold" didn't help me breathing issues, so he prescribed a steroid.

He's a good Doctor and he has quickly become a good resource for my mommy & daddy.

So thankful that I have good medical people taking care of me..

I am also thankful for tylenol AND ibuprofen too!!

DAY OF LIFE 141

Today is EASTER Sunday.

What a beautiful day outside,

My mommy and my daddy didn't get one ounce of sleep last night because I was so sick.

I had to be suctioned out several times.  Thank goodness for this hospital grade suction machine.

I was very unhappy & cried most of the night.

My mommy & Nana missed the early morning service because my mommy was so tired...but, they were able to go in the evening.

We had an Easter Egg hunt while I slept.

My brother & sister had fun!!

My Aunt & Uncle came for dinner.

Even though I didn't feel very good, the fact that I am alive & home is a total miracle & blessing.

My family is so grateful.

DAY OF LIFE 140

Today is Saturday and I officially have my first cold since I left the hospital.

My family has been so careful with me - making sure to wash their hands all of the time & I haven't had many visitors.

Now I really don't feel well.

I am still refluxing and now I am coughing "croupy" like & I am very stuffy too.  I already have a small airway that makes breathing hard, but it's extra hard

My mommy & daddy are doing everything they can to help me be comfortable (tylenol, humidifier, nebulizer, axid, prevacid, miralax, suction machine, nose drops, boppy pillow, feeding machine, murphy drip...whew!!

At least I am at HOME and I love this!!

Super thankful!!