Feelings.... Updates... and Pictures

So much has happened since my last post. I've been meaning to sit down and write a post for the last week... but every time I try to sit down and write .... I just don't feel like it ... I just have so many emotions, so many thoughts, so many things going on in my head, that it's hard to express.  I'm normally not like that. I like to write. I'm not the best when it comes to grammar and punctuation and yadda yadda yadda ........ I know that I use this ( ........... )  much to often .......... but ...... when I'm writing, I'm thinking, and my fingers just type what my mind is saying ... as if I'm talking to somebody .... and that's how I talk ... I pause a lot ... hence the dots :-)   Anyway.... My point was...  Normally I don't have a problem expressing myself in writing , and I like to vent.... but lately I've been having a problem with it.  I sit down to write, and I just think .... why does it matter? who cares what I say?  What I feel?  Why do I feel the need to write it down?  It doesn't change anything.  And sometimes I feel that no matter what I write or how much I try to explain myself and my emotions.... I'll still never really be able to express EXACTLY how I'm feeling ........ Because I don't really even know how I'm feeling sometimes...  I can't count how many times I've gotten asked " How are you doing? Hanging in there?"  this week ........ and every time ...... I've had no response .... I kinda just shrug my shoulders and change the subject or just start talking about how DYLAN's doing ........ because honestly... how I'M doing... all depends on how Dylan's doing .  When Dylan has a good day .... I have a good day .... when he has bad days, which have been a lot lately .... then my days are bad also ....... it drains me.. both physically and emotionally.

So I'll start with everything that's happened medically ..... then get into the fun stuff  :-)

So we had a Cardiology appointment on the 18th ..... and the whole time that Dylan's Cardiologist was in the room examining him, Dylan's Sat monitor was going off ........ he was in the low to mid 70's the whole time .... I almost threw the monitor against the wall because I know that his Card doesn't want him in the 70's at all, let alone in the low 70's ........ and I was afraid that she was going to want to keep him again .....  but these were the options she gave me ....... she said " we can put him on oxygen at home and increase his meds" ..... or ... " we can have Dr. Patrusko (not sure how you spell his name) do Dylan's surgery " ..... " or... we can take him back into the Cath Lab and balloon his shunt to give him some more time so that Dr. Lamberti can do his surgery as planned" ........ Really??  those are our only options?  I don't like any of them!!  I opted for the Oxygen ...... ha! If I only knew what I was getting myself into ......  the Oxygen was delivered to the house the next day ....  The tech came and explained everything to us, and he had me try to put the nose canula on Dylan...... OMG ...... poor peanut freaked out!!  Actually... Poor Tech guy ....... he just sat there with his mouth open and said " ...... I've seen babies and kids get upset about the oxygen and protest it.... but that is the most violent reaction I've ever seen" .........  yeah... Peanut has a little bit of a temper and he doesn't have a problem letting you know when he doesn't like something........  So we figured that we'll just wait until Dylan is sound asleep and slip it on him while he's sleeping right? ......... yeah right!  He was sleeping .... like dead sleeping ... heart rate down to 115 ..... totally out of it ........ the minute the canula even touched his nose... instant freak out .... I had to basically hog tie him down and just get it in, tape it to his face and see how it was going to go from there.....  He wasn't having it ..... he cried for an hour straight... the whole time his Sats are int he 60's ... the oxygen wasn't helping at all because he was screaming so much,  and he wouldn't calm down... so I just took it off .........  I tried this the next day also ....... and came to the conclusion that Dylan doesn't do Oxygen ....... no if's, and's, or but's about it ........ we were gonna have to figure something else out ..... So we had another Cardiology appointment on Tuesday, and I told her what happened ...... But I also told her that the increase in medicine seems to be helping his Sats, but that they get low again about a few hours before he's due for his next dose...... so she said that the medicine is good for 4-6 hours..... so thats why they start to decline a few hours before his next dose..... so we changed it to 4 times a day... every 6 hours instead of every 8 ..... and for the most part, its helped ..... he still has points where he's in the low 70's.... but he's still maintaining enough to make it to his original surgery date with his Surgeon.  So that leaves us where we are today ........ getting ready for his Pre-Op appointments tomorrow.... and Surgery on Friday. Ugh!!! I'm so damn scared! :-(

On the Gastro front ..........  we had his appointment today to go back and check for blood ...... and YAY! No blood!!  So what does that mean?   Well they say that he has a pretty severe milk allergy .... so severe that he can't even have a formula that is made in a factory that makes milk based formulas....  he was on EleCare.... which is an Amino Acid based formula just like the Neocate that they switched him too ......... but the difference is that EleCare is made in a factory that also makes Milk formulas.... so I guess the cross contamination is there ........ Neocate is made in a factory that only makes Neocate so there is no risk of cross contamination.......  that's what they say anyway ..... me?  I'm not to convinced yet .... I know that they said there was no more blood .......... but that was from stools they that they had me collect that were a few days old ..... they say it doesn't matter, that it can sit for days before it's tested ......... but I just don't know ...... Trust me, i'm not LOOKING for anything to be wrong with Dylan .....  It would be great if it really is just an allergy .... but I just want to make sure that's what it is ....... I'm going to request that they check him for blood again while we're in the hospital before they send us home ....... that way, I know that they are checking his stool right away and its not a few days old ........ I don't know... maybe I'm being to cautious.... but I just want them to check fresh poop!  haha!  ewww, I know :-)



Ok.... so enough about all the medical stuff ......... on to the FUN stuff!   I wanted to make sure that we had some really good days with Peanut this last week ...Lately I've been feeling bad about not being able to show Dylan that there is more to life than just doctors appointments and hospitals ..... We don't get out of the house much because he sleep's a lot... and we always have doctors appointments and stuff ..... So this weekend we took him to Balboa Park and had my dad take some family pictures of us ... and they came out great!!  Peanut really enjoys being outside... he likes to people watch... and he really liked the fountain ..  Then on Sunday we spent the day with Joe's family BBQing and hanging out .... it was a really fun time ...... and Monday I took him to get some studio pictures done at JC Pennys ......... and Tuesday we had a really fun play date with his little friend Lyam ..... It was a great few days!! And of course I'll leave you with all the pictures :-)

Tomorrow is Dylan's Pre-Op appointments ........... totally not looking forward to that!  And then Friday is the day ..... I'll try to post about his appointments tomorrow, but in all reality .... it probably won't happen ... I know myself... I'll WANT to post ...... but I'm gonna be so tired tomorrow, and I'm just going to want to love on Peanut all night before Friday ........ So you probably won't hear from me until after Peanut's surgery .... but for those of you who are my friend on Facebook ......... I'll be posting updates on there about his appointments and his surgery <3

OHHHH!!!  How could I have forgotten??  Dylan sat up ... on his own!!  He's not doing it all the time... and most of the time he needs help .... but hes really trying, and hes able to do it on his own for awhile at times... it's so cute!  He's also trying to roll over now ..... After he kicks the Glenn's butt ......... he'll be home sitting and rolling over in no time!! <3

He's sitting!! <3

Love him so much! <3

 

Full of smiles ;-)

He love's his play mat that Nana bought him <3

Dylan likes bath time

And here are some of Dylan with his friend Lyam <3  They are 8 days apart

And the Family pictures my Poppo took for us <3

We love this one!  His cute little legs hanging over the edge <3

My two handsome men <3