Going "Gluten Free"...

Last week we had quite the scare regarding Sadie's health. Her "routine labwork" came back & most of the results were abnormal.

The possibility of Leukemia (or something else, not sure what - there were many things "off", the most concerning to Sadie's Pediatrician was her low platelets count) was high, along with a thyroid issue & Celiac Disease. We had a new set of labs done & this time, everything came back fine, except the Celiac Disease. We are SO relieved!!

We have an appt. at the end of March with a GI Dr. to discuss the Celiac Disease, but after discussing it with my husband, we have decided to decline any further testing. We are not going to put Sadie through sedation/endoscopy just to confirm the diagnosis. In our opinion, she's been through enough already & this testing is unnecessary for her. Plus, she already has many sensitivities/allergies to food, along with reflux issues. We're hoping that maybe *this* (GF) is the key we've been looking for all along.

So as of Wednesday, 1/22/12, we decided to go Gluten-Free as a family. It's definitely process that's going to take a little bit of getting used to (especially for Mia & AJ, they both have SPD & as a result, sensory issues with food), but so far, so good!

My oh my .... it's been awhile since I've blogged anything.

We have been REALLY busy, but I'm hoping to get back to it.

The kiddos are all doing very well. Xavier is now 14, Mia is 7, AJ is 4 & Sadie is 2! My kiddos are growing up, way too quickly if you ask me!!

Sadie

It's been so long since I've posted any pictures! My, oh my, Sadie sure has grown!!

Sadie's Calendar Photo Shoot

Sadie is going to be in the Down Syndrome Association of San Antonio's 2011 Calendar & had her photo shoot yesterday!

Will post a "real" update soon, but wanted to share these pics while I had a quick moment.

March 1-7, 2010 {Week in Review}

Whew, we survived yet another busy week.

Monday ~ I had to take Sadie to the hospital for ultrasound scans of her hips & her head. Thankfully all is well & everything looks normal on both accounts.

Tuesday ~ Took AJ & Sadie to playgroup, which was at the park this week. Due to our busy schedule, I haven't been able to go in quite sometime, so I was glad to be able to attend this one. Sadie got some fresh air from the comfort of the stroller & AJ had a great time burning off some energy. Afterwards we stopped by the Tax Accessors office & filled out the forms for Handicap parking placards. That will help make life a bit easier. Went to the monthly "Parent Support Group" meeting for the local chapter of the Downs Syndrome Association in the evening. I always enjoy meeting new families, fresh faces & learning lots (even if the topic doesn't exactly apply to us just yet). And, for the first time ever, we left the older kiddos in the child care (church nursery) provided. That went well, they survived & actually, had a great time.




Wednesday ~ Errands, Library, shopping adventure at Target, etc.

Thursday ~ Sadie had to get her Synagis shot (for RSV). Last one for a few months since RSV season is almost over - YAY!! She weighed 9lbs 5oz, news which made my day since we're currently do an experiment of sorts (she sleeps thru the night & the Dr. has said to let her do so, as long as she continues to gain weight).







Friday ~ Spent a few hours at the Social Security office trying to straighten out the SSI stuff for Sadie (they still had her as being in the NICU).

Saturday ~ We had a lazy day of doing "nothing" aka I spent quality time playing with the kiddos while hubby worked. It was very nice not to have to be anywhere at a certain time. And, right before bedtime - Sadie rolled over on to her tummy!! Sooo proud of her!!




Sunday ~ Shopping & errands, preparing for yet another busy week that lies ahead.

Going to give it my best effort this week to keep up with the blog, so I don't have to "recap". We'll see....

February Recap

Oh how I wish I could keep up with this blogging thing (mainly because it's nice to have everything written out so I can refer back to it later if necessary), but I just can't seem to find the time. I "go go go" all day long until I just can't do it anymore (aka I fall asleep as soon as I sit down! LOL). I'm completely exhausted, but honestly .. I wouldn't change a thing about our life. As tired & drained as I am, I'm loving every minute. We are truely blessed.



So while I have a few spare minutes, here's a quick recap of February.....

Xavier (12 years old): nothing much new with him, besides the fact that he slammed his thumb in the door of the car so it's quite nasty looking at the moment & looks like he's got a ways to go as far as it getting better. OUCH!! Book club, school dances, birthday parties, that's about it.



Mia (5 years old): lost her 1st baby tooth. She was SO excited, she's been waiting for so long for that to finally happen. She was also thrilled to find that the tooth fairy had left her $10. Mia is going to need to have a CT scan done & most likely major surgery. We took her to the ENT (she had an ear infection from Nov. - Jan, it just would not go away) & were shocked to find that she has a hole in her eardrum & skin is now growing in & around it. That will need to be repaired before it gets worse & affects her hearing. According to the ENT, the surgery is 3-4 hours long, very involved including the need for a skin graft & even once it's done there is a 30% change that it will come back. I thought in the worst case she might need to have tubes placed again (she had them put in at 1 year old), but wow, was I ever wrong.



AJ (2 years old): has learned to dress & undress himself. He practices often. He'll be doing something & just suddenly decide to strip down to his diaper. It was really lovely when he did just that while Sadie's PT was here! haha He's still very much obsessed with Disney Cars, I don't see that changing anytime soon.




Sadie (2 months old): is growing, growing, GROWING!! She's doing great. She's still on the oxygen (1/8 liter at 100%). We've met with the pulmonologist & she also had a sleep study done so *maybe* she'll be coming off the oxygen soon. Only time will tell (the results of the sleep study take several weeks to get back). She had an appt. with an Opthomologist & other than being very slightly near-sighted, her eyes are great. Sadie weighed 8lbs 9oz at her 2 months checkup on 2/25. Speech therapy & physical therapy are both going great. Lots of appointments & we're very busy, but she is so very worth it.





Our family: we used our tax refund & {finally} purchased the minivan that we so desperately needed. It's a '96 Ford Windstar with 86k miles on it & absolutely nothing wrong with it (we had it checked out bumper-to-bumper @ Firestone before we bought it). It took a little getting used to, but I love it!

It's been awhile...

I think it goes without saying .. I've been a bit busy. ;)

So starting from right now, I'm going to *try* to be better at this blogging thing. Easier said than done, so no promises, but we shall see.

Anyways ... Sadie came home on January 11th, 2010 & we've been enjoying every minute, making up for lost time with her. Busy? Yes! Sleep-deprived? Definitely! But she's worth it, we are SO blessed to have added her to our family.

She is on a bit of oxygen (an 1/8 of a liter) & an apnea monitor .. but beyond that she has no issues. She's doing GREAT!! There's no real medical reason they can find as to why she needs the oxygen, so they think it's most likely due to low muscle tone. The issues that she was "suppossed" to have (all the stress, all the worrying), she doesn't. We are absolutely grateful for that.

At last check (2/4/10 - took her in for her Synagis injection) she weighed 7lbs 12oz! Growing, growing!!

Sadie had her 1st PT session this morning, that went well. Doesn't really consist of much just yet, since she's still so young/tiny.

We also met with the pulmonologist this morning & I am very pleased with how that appt. went. We are going to proceed with doing a sleep study, to see if Sadie is ready yet to go without the oxygen. Although the male nurse was ignorant (made a comment that he's "so very, very sorry" that Sadie has Down's Syndrome -- but to us it is NOT a bad thing at all), the Dr. is excellent & very informative. He told us several things that we were not already aware of, which is great for me .. I'm all about research & being prepared.

I think that about covers it .. ya know, in a nutshell! =)

More pictures....

Dealing with Sadie being in the NICU has been extremely difficult & I don't have much time, but I wanted to add some more pictures of our little princess....

Introducing...

Sadie Iris Martinez

12/17/09 @ 11:45am
5lbs 12oz
18" long

She is in the NICU, but is doing extremely well. Much better than originally diagnosed/anticpated.

The wait is *almost* over...

We will be meeting our baby girl TOMORROW!!

I know I haven't updated in awhile (I'm busy enough as it is without all the appointments & whatnot!), but the time has come -- Sadie's birthday.

I'm scheduled to be induced bright & early tomorrow morning.

Hoping & praying that all goes as well as can be - we are very eager to meet her!!

Fine.....

According to the specialists (I actually saw both of them yesterday at the same time), baby Sadie is "fine" & they'll see us next week. Ummm .. okay?!

I'm relieved she's "fine" (they say the fluid is the same as it was last week - no change), but at the same time, quite confused. I flat out mentioned to them that they scared the crap out of me last week & the response was "well, don't get yourself all freaked out". What?! Send me for steriod shots, having me talking to the head of the NICU, talk about immediate emergency c-section, etc., & I'm not suppossed to worry? Yea right!! I busted my behind this week to get everything I possibly could in order "just in case" (we DO have 3 children at home to worry about, too) .. yet now they act like all of this is just no big deal.

*Sigh*

Update....

Here's the lastest update .. this is what I posted to Facebook yesterday...

Went to the Specialist today (10/30/09) for weekly testing (BPP/NST) & to check up on the fluid (Pericardial Effusion) around Sadie's heart. I'll be 31 weeks tomorrow.

Good news is - she's no longer breech, she turned & is now head down, thankfully (I would prefer to avoid having a C-Section if at all possible).

Bad news is - The fluid has increased in size (over 6mm) & now the Dr.'s are getting VERY concerned. The Dr. has made it very clear that if the fluid moves anywhere else to Sadie's body, or increases much more, they will deliver me immediately. When will that be? We don't know .. but my next appt. is Friday morning (7:30am - yikes!!), so it could be as soon as THEN. My husband doesn't worry about stuff like I do (he's just like that - says he doesn't worry about things he can't control), but even he commented on the sense of urgency in the Dr.'s voice.

He sent me over to the hospital today to get a steriod shot (mainly to help her lungs develop), I have to go back to get the 2nd one tomorrow. I called my friend (who just so happens to be nurse) as we were waiting at the hospital & she made a comment that the steriod shots only last for 7 days. I asked about that when we got called back in & sure enough, she was correct. So in a week I'll either be getting more shots, having a baby, or ??? Who knows.....

In addition to sending me to the hospital to get the steroid shots, the specialist called right then & there & set us up yet another appt. This one is to meet with the head of the NICU, which we'll be doing Monday morning (then he mentioned next on the list will be a Pediactric Cardiologist). So, things are looking more & more that we'll be meeting our little girl sooner, rather than later.

This was definitely not how I was expecting today to turn out! I hate the "not knowing" (I'm big on planning & worry how we're going to do this, especially with having 3 other kiddos to take care of while our baby is in the NICU), but it will all work out one way or another. <3

... and to keep up her status of already being a lil' wild one, Sadie decided to flip herself around (ouch, that was painful!!) during my NST & my husband had to get the nurse to come back in & rearrange the monitors!! She had flipped completely & knocked the monitors to where they were not picking up her heartbeat! lol

Update from 10/21/09

I guess I neglected to post this here. Not suprised though, lately I don't know if I'm coming or going...

Here's the update from 10/21/09:

For the most part, everything went pretty good at today's appt.

The fluid on Sadie's heart has increased (to 5mm). That news is discouraging, but they said there is still a very good chance that she will still be born perfectly healthy, especially since she does not have fluid anywhere else. Where the fluid is concerned, both specialists have pretty much changed their attitude towards it (leaning towards it being "ok" when before this it was a pretty grim indicator of what's to come), which has everything to do with a recent medical journal article on it.

Still undecided fully on whether or not she has a VSD (hole in heart). They are leaning towards it being there, but if it is, it's extremely tiny (1.5mm). So with that being the case, it could close before birth or shortly after, with no further issues.

Sadie weighs 2lbs 11oz & is one very actice little girl. Apparently she's already bored though, at first she was covering her face with both hands, then she moved on & decided she'd rather suck on her toe! lol

She is currently breech, but they said not to worry about that just yet, there's still time. Not too thrilled about that though. AJ was breech & I had to do all those lovely exercises to get him to turn. Here's hoping Sadie turns on her own, soon!!

Maybe it's just a coincidence, but the Dr.'s seem to be more positive/encouraging when my husband goes along with me. Something that pisses me off, but also something to keep in mind. With so many appointments it's been getting very difficult to coordinate them with his work schedule, babysitter for AJ (children are not even allowed in the waiting room at the specialist's office), etc.

Another update...

I thought the worries about her heart were over, but I guess I was wrong.

Here's the update from yesterday (copied from what I posted on FB - sorry, I'm lazy).

Really wish there were more definite answers. Saw the other specialist today & he said he's pretty sure it is fluid on Sadie's heart. He's still not absolutely sure, but said either way there's nothing they can do. I go back next week to check on it. He also seems to think she has a small hole in her heart, but again, not sure and again nothing they could do about it anyways. And if that wasn't enough, now at my appts. the hot topic seems to be the "increased risk of stillbirth" due to the DS (which is even higher with these possible heart issues). Problem with that is, there's just no way of knowing what exactly causes that & how to prevent it. Sure they could deliver me early, but that doesn't come without risk either. Great, like I needed even more things to worry about.

I'll write more later ... if I can manage to find sometime.

Update....

Life is incredibly busy/hectic/crazy (& only getting worse!) so I've fallen way behind on updating.

I had another appt. with the specialist on October 1st (@ 26 weeks & 5 days). I was very nervous to go by myself (Mia was sick, so hubby had to stay home with her & AJ) but everything went pretty good. I was just getting over being really sick (flu)myself & also fell pretty hard in the kitchen about a week prior, so I didn't want to reschedule the appt.

Sadie seems to be doing good. She is measuring about a week behind, but the Dr. said that's been the case from the beginning so it's okay, especially because she's growing good. Her estimated weight now is 1lbs 11oz. I have to go back again in a week as a precaution, the specialist wants to recheck & make sure she truely doesn't have any fluid around her heart. He doesn't think so (because the u/s is not showing any blood flow activity in that area, which would indicate fluid), he thinks is just a large "fat pad", but he wants to be sure. If it is fluid, it will only get worse, so he doesn't want me to go another 3 weeks without being absolutely sure. After my next two appts (1 week & 3 weeks), I will be 30 weeks, at which point I'll start going to the specialist weekly to keep close tabs on her growth & development. He said it will be extensive testing each & every week (u/s as well as a NST test) to make sure she's not in danger due to the increased risk of stillbirth, premature birth, etc.

Quick picture...

... from yesterday's u/s.

Update...

The appointment yesterday took forever (mainly because baby would not cooperate), but it was worth it ... NO heart problems, at all!!

They were even trying to figure out whether her foot (it is the left one) is actually clubbed or not. The Dr. determined that it is, but it's extremely mild. That was the least of my worries anyways, but more good news is always nice to hear!! So other than having an extra chromosome (aka Down's Syndrome), she seems to be perfectly healthy!!

Tomorrow....

Tomorrow is a very important appointment with the specialist. Now that I'm further along (as of tomorrow I'll be @ 22 weeks 5 days), they're wanting to do a detailed ECHO/ultrasound of Sadie's heart to see if she has any issues/problems. I'm hoping the best & fearing the worst .. but really I'm not scared. Worried, sure .. but scared, no. We'll handle whatever comes. We know heart problems are common with Down's Syndrome so I'm certainly expecting an issue of some sort. It will be good to know more as far as what to plan on though, such as delivery, possible NICU time, etc. I'm looking forward to seeing our baby girl again, it's been just over a month since my last u/s. I guess I got a bit spoiled with those weekly viewings. ;)

Sidetracked...

I just realized that although I updated on Facebook, I never ended up posting it on here that we got the complete results back from the amnio on on August 10th.

Here's what I had wrote at that point:

Just got off the phone with the specialist ~ Amnio results are now 100% complete! No translocation or weird chomosome combination of several things, it's for sure "just" Down's Syndrome, confirming the FISH part of the test & what we already knew! YAY!!

They didn't call me specifically with the results, I was talking to them about something else (the whole tying to switch regular Dr.'s thing) & then asked if the results were in. Good thing I asked, because apparently the ball got dropped somewhere & they thought I had already been informed.

So that's part of the reason we've been so busy. Between getting involved with the Down's Syndrome Association, enjoying summer vacation & getting 2 kiddos ready for school ... it's been C-R-A-Z-Y around here.

I'm also trying to get "done" selling on eBay (which means tackling a garage full of unlisted stuff). I've been wanting to quit for quite some time anyways, but know that the clock is ticking ... I am definitely not going to have the time for it once Sadie arrives.

Update...

Had a quick checkup at my regular Dr. yesterday (still haven't been able to swtich Dr.'s yet -- still working on that), at 20 weeks 5 days. They got us right in & out since we had the kiddos along & hubby had to go to work. Her little heartbeat sounds strong & I'm measuring right where I should be.

He said the contractions I've been having (mostly at night) are normal, but also an indicator that I do too much (guilty & I know it!!). He said to slow down & take it easy more often .. easier said than done though, of course.

I haven't written much lately .. we've been SO busy. Hopefully once school starts, I'll be able to have a bit more time. Ha! We'll see...