Where do I start?

Well, it has been quite a week already. Hard to believe it is only Tuesday? Wow. So anyways, I called clinic on Monday cuz Jordin's cough had increased. We were going to start abx on Friday if she had not improved, BUT I really thought she had improved, so I didn't want to call and start abx. Well, by Sunday night she was coughing in the night :o( So I decided I better call on Monday and see what the doc says.

Went to Ashlee's PT conferences... GREAT news as expected! Ashlee is doing wonderful :o) A little smarty pants. A few thing to work on, but overall doing her best in school! I was all hyped up about the great report on Ashlee to get home and find out on a message that Jordin needs to start Tobi and Cipro. Well, that could only mean pretty much one thing...she cultured Pseudomonas again :o( I confirmed that with the cinic on Tuesday morning on the way to her upper GI appt. SO, that will tac on another 30-45 minutes to or morning and evening treatments. Wow...not sure how...but we will do it! She hasn't wanted to wear her mask again, so that will be an issue to. Her cough today is viscous. My poor baby girl :o( We Need to get this bacteria out of her lungs. She don't need it!

Her upper GI went well, in a sense...her Nissen is working wonderfully and there is no reflux! WHAT? That is crazy. Then WHY is she puking on average at least every other day???????? I am shocked w/ the result today. I seen it myself. Nothing was coming up! Se was crying, screaming, and coughing...and nothing. The coughing and crying def triggers it at home, so I am stunned. It was sad though. She hated it. They strapped her down and shot a bunch of yucky Barium mixture into her mouth, forcing her to drink large amounts of it, while she cried and gagged :o( I hate watching her go through all this :o( I just wish the test would have showed SOMETHING. I mentioned the slow gastric emptying to the tech and he said that she was emptying great as well. Her small bowels were already filling up as we watched. Interesting.

Oh and Jordin got her first new button change on Monday! She has a nice shiny new button :o) It was very simple. I mentioned the slow gastric emptying to the surgeon as well and he said if the upper GI showed nothing, he would order the test for that. So, we'll see if that is still what he wants to do. I think we are about at a stand still. Not sure what comes next? Scared for Jordin though.

Will keep you updated :o) As you can see, she is still keeping her spirits up! She is such a happy baby when she is allowed to be! FUCF!

Clinic with TWO

Wow, you could never imagine being in the doctors office for 2 hours w/ a five year old and an 18 month old. Seems like an eternity! What a stressful 2 hours!
Get both weights/heights/pulse-ox/temp and whatever else they need...that's the easy part! LOL (Well, Jordin HATES for me to set her on the scale to weight and measure her, but other than that they do well with this part!)
So then we sit and wait...sit and wait...going insane trying to keep them occupied til the doc finally comes in! THEN, I am trying to converse with the doc and Jordin is getting into things, Ashlee won't stop yapping...and so on. The WORST part that almost gave me a heart attack...I turn my back for sanitizer for 1 minute and what do I see when I turn back around?!?!?! JORDIN picking her fruit loops up OFF THE FLOOR and SO close to putting it into her mouth! You can bet I almost FREAKED out! LMAO I told the doctor, as jokingly as possible...but FAR from joking...that I am glad we hadn't done the throat cultures yet, cuz I am sure we will have something by the time we get out of there!

NOW the doc goes to get them crayons and stuff. Don't tell them that Jordin colored on the wall while I was, again, trying to converse with the doc! LMAO What a mess though, I HATE going to clinic! It takes too darn long in that office!
Anyways...now that I have vented about our visit, I will tell you how it went 'health' wise :o)

Ashlee is just above the 25th percentile, which earlier this year she was as the 45th...so we have lost some on the chart percentage wise. BUT she still went up a number since last time...now 36 pounds, so they want me to continue our positive reinforcement w/ the silly bands to drink her Boost and eat her meals. It seems to be going well so far, so hopefully we can keep this up!

Ashlee was quite healthy otherwise :o) YAY!

Jordin...thinking she's got it down pat already :o)

Jordin is now in the 25th percentile for BMI! She is moving on up! YAY! Great news! She now weighs 19 pounds 3 oz! Let's keep that up too! We are still working w/ her feedings/meals as she has a hard time tolerating it. I just don't get it. I am kinda irritated w/ the doc there. I told him how I have read up on Slow Gastric Emptying and that it TOTALLY fits Jordin. I told him I am convinced it is what she has. He looked at me and said "I'm sure she does". That was pretty much all he had to say about it! I asked him, "well shouldn't she be tested for it?". He said since they have the upper GI scheduled, we will do that test and then go from there. Well, she had an upper GI in May, showed nothing we needed! WHY are we going to do another one which in turn will just lead to doing other tests?!?! Grrr... Why not just do the gastric emptying test to begin with? They have ruled out other things already! WTF? Why are they wasting our time like this? It just makes me so mad. I don't have time to waste and Jordin has been through enough. We just want to get to the bottom of it all. She does seem to be doing better w/ eating and her Boosts during the daytime :o) Good sign! I have brought her down to only 3 feedings per day, rather than the 4 they want. This gives her tummy more time to digest before her next feeding.
Anyways, I am happy she has shown a plus in weight for now. Hopefully we can keep going up from here! For both of them! LOL
We were doing good w/ Jordin's feedings the past week prior to the appt...next night, not so great...next night after that...not so great either :o( Grrrr.... I hate having her coughing in the night from her feeding. And I can't keep her propped up either! She wiggles her way out in a matter of minutes! I am up and down all night long trying to keep her propped up.
So we go to the surgeons on Monday. The doc will show me how to change out Jordin's Mini One button and she will get a new button in :o) Then her Upper GI on Tuesday and then more feeding therapy on Thursday. I am worn out from having all these appts in GR. Our whle day has to be planned around them. Like our days don't have enough planning in them!
Also Ashlee's Parent-Teacher conferences on Monday night. See how Ashlee's doing in Kindergarten!

Ashlee, fell asleep in her Vest playing on the computer. Tired much?

I think that's all for now. Got everything off my chest! LOL Hope everyone else is doing well!