I want everyone to know how much I am improving each and every day...it's slow, but it is "sure."
My cute Aunties, my uncle & my cousin came for a short visit. It was so fun to meet them all for the first time.
Nana had to go home, and that was a very sad day around our house...Even our doggy Sammy was sad and is still moping around the house looking for his friend Nana...
My mom & dad are really busy trying to stay ahead & take care of me...I'm still pretty high maintenance & I do not ever like to be alone...(But...the camera monitor my Auntie gave me is so great for them!!)
My dad says I have "super sonic" hearing because I know instantly if I'm being left and I start to "crank"...(I think this super sonic hearing will come in pretty handy when I am older..)
Physical/Developmental Update:
- I am growing..I weigh about 12 pounds
- I am still eating specialized formula Elacare (thank goodness it's going through my tube because it smells & tastes awful)
- My belly has stretched out & I can tolerate about 50-55 mils at a time now - which is great because I don't have to stay "hooked" up to my tube all day!! (WAY TO GO DAD FOR "ROCKING THE BOAT" AND PUSHING ME!!)
- My reflux is minimal to almost none. However if I do have an "episode," it sounds pretty scary like gagging - but that Nissen surgery is doing its job & holding stuff "down" where it belongs.
- I am still taking my Prevacid and Zantac everyday.
- Some days I cat nap alot & some days I don't.
- BUT....great news!! I am "sleeping" a longer stretch at night which is a huge improvement. (Since Nana has left, my mom & dad have a "schedule." Mom goes to bed "early" & dad stays up "late" with me. Then mom gets up with me as needed..sometimes thats minimal times & sometimes thats multiple times. I think they are both feeling pretty tired, but this is the way they've found it to work because...mom can't "go" to sleep with my since sometimes my loud, striderous breathing keeps her awake - she has a hard time disconnecting from me - and dad has experienced my mom when she doesn't get sleep...YIKES! It's not fun, so he figures staying up late "for the cause" is better than a sleep deprived mom. (I agree.)
- My muscle tone is a funny thing...some days I am so strong & I appear to have the strength to "try" new things....but some days I just can't. My head/neck are still very floppy & very underdeveloped, but I'm making my own progress...it may be slow, but is sure progress!!
- My "new" thing is so cool...I am "OK" if my parents put me "upright" on their shoulder. (I know this sounds like a "normal" thing for a parent to put their baby "up" on their shoulder in a burp position, BUT for me, it's a HUGE milestone because they never could hold me like that and have me be "okay" with it. (As long as they protect my g-tube, I can handle being like that for a few minutes.) It's pretty cool for them
- My parents are sitting me up on their lap or on the couch - almost anywhere they can as much as I will let them. but my preferred position is still arched back as far as I can go....curled backwards in a "c" sort of position. I give their arms a workout for sure just to hold me.
- My eyes are not looking "up" as much as the were, but this is something my parents really "wonder" about..can I see? What do I see? Some times they can get my eyes to "track" and I appear as though I can "see" what they are showing me...AND...this is so exciting for them! But other times, nothing can get my eyes to focus come "down" and if they put something towards my eyes really fast to see if I will blink or move away, it doesn't even "phase" me...like I don't see it. I do however, always "turn" towards the "light." We have an appointment at the eye Doctor next month to see if the can give us any hints as to what "may" be going on.
- I have an appointment next Wednesday for another swallow study...they will have me drink a bottle & my parents will watch "where" the liquid goes on an x-ray. I "can" swallow. We just want to see "where" stuff is going when I swallow. If all goes down the right pipes, then, my parents will start working with me to learn how to take liquids by mouth...our goal is to get me off the feeding tube & eating normally (and I WILL..you just wait and see.) The one thing that makes it kind of difficult for me is that the "roof" of my mouth is VERY high (arched palate.) When I get a "taste" of something like on my binky, it takes a long time for me to "clear" it out. My parents think it is because my tongue doesn't reach the top of my mouth to help me swallow.
- I am smiling SO much more now and I LOVE to be interacted with. Kissing is my favorite!! My family will make a "sound" with their voice and I do it back to them very softly. They like it so much!
- My breathing is still pretty noisy and I breath really fast at times too...sort of like I just exercised. but..there are times, I am very quiet..it just depends on my position. (My parents think that this is why I like to be "back" as far as I can...to open my airway and breathe better.)
- My cry is still soft, but it is louder than it was a few months back. This tells my parents that my throat is starting to heal from all the acid burns. They don't know if there is any permanent damage, we will just have to wait and see. (My dad always jokes that he had to "pay extra" for the "squeaky toy" to be installed in me AND for my cry to be "quiet." He always finds the positive in any situation, doesn't he?)
- My mom is still pretty protective of me and she hasn't taken me on any of her errands yet. She has tried several times to take me on a stroller ride outside, but it has never been successful UNTIL last night...we went 30 minutes and I didn't get cranky until the end...this was SO great for my family.
- My g-tube looks A+++. My mom still cleans it everyday to check on it, but it doesn't hurt me anymore. It's weird for her to say this, but...it's just getting part of her normal routine. She has finally just "bit the bullet" and "cuts" into my clothes so my tube can poke through...(she was having a hard time doing this before but there are only so many PJ outfits a baby can wear...sometimes it's time to get "real" clothes - even if I do stay home all day, right?)
- My binky is still my best friend and my parents are still looking for a safe way to help me hold it "in" - (they've tried all sorts of weird, home made things.)
Each and every day we are so grateful for this life we have been blessed with...it's certainly a detour from the road my parents thought they would be on when they found out they would have another baby, but who says a "detour" wasn't where you should have been in the first place.
Blessings!!
Love Benjamin
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