Chew on this

Another week, another full medical dance card for Gwendolyn. In addition to her typical O.T. and P.T. therapy appointments, she had a routine follow-up visit with the plastic surgeon to check the status of her jaw. All turned out normal during the checkup, not counting the fact that Mom was stuck in the waiting room almost two hours past the regularly scheduled appointment time with a pair of fussy babies because the doctor was running late. Ah, the joys of health care.

After the checkup, the doctor asked that Gwendolyn go to radiology so they could get an x-ray of her airway on the off chance that an anomaly there is causing some of her sleep issues. That became a hairy situation as a nurse first had to be found to hold Braelyn outside the x-ray room since Dad was stuck back at work. Being an innocent bystander, they didn't want to risk Brae Bear getting any of those waves in her system. Then, they rolled up a towel and placed it under Gwen’s back as Mom held her shoulders flush against the table so that the tech could get the proper angle needed for this x-ray. True to form, as Gwendolyn cried due to discomfort (who blames her) and uneasiness over the situation, Braelyn was sticking out her tongue and blowing raspberries at passersby. No news back yet on the results of the x-ray but we anticipate that given all the ENT scans of The Gwenner’s airway that have already transpired, there won’t be much out of the ordinary there.

One newsworthy item we forgot to mention is that both Braelyn and Gwendolyn are finally cutting their first tooth. Ironically enough, they are both lower teeth on the opposite side of the jaw from one another. Just another example that the girls are fraternal and not identical twins… And yet while they really are nothing alike, they are each so sweet and lovable in their own unique ways.

As you can see in this entry’s photos, we decided to change things up a little. It seems like every other post lately has a photo of Gwen in some state of slumber and Braelyn acting like a goofball. So, this go-around we decided to swap the traditional roles of the twins. While Gwendolyn gives a quirky, inverted suck on her binky, Braelyn is sawing some serious logs in her photo. We can’t help our bias, but they still each look precious to us!!!

Not Much New to Tell

We had a lot of running around this past weekend and yet really didn't accomplish much. So, this was another lost weekend for the Castellanos in that regard. Still, we continue enjoying traveling around in the new minivan and giving the girls as many "field trip" experiences as we can (even if it is just going to Costco or Hy-Vee).

There still hasn't been much fallout from Gwen's sleep study results... We're basically just waiting for the MRI in September before we get further direction. Between then and now, she'll remain on her typical bedtime regimen of a blood-oxygen percentage monitor with oxygen administered if she needs it. Honestly, we still haven't had a situation that required supplemental oxygen since the doctor told us to discontinue it from constantly flowing overnight back in May. The one new addition for Gwendolyn is a misting medication that is suppose to help clear her nasal passages prior to bedtime.

Braelyn is standing and taking awkward steps with Mom's assistance but she still isn't a crawler. When she sees something she needs, she just rolls right over to it.

Both of the girls continue to do well with their food. Braelyn is eating like a champ while Gwen's getting better and better at chewing (or should we say gumming) her food every day.

We Have News About Gwen's Sleep Study

True to form, less than a day after we posted our last blog entry, we heard back from the pulmonologist. The results were somewhat of a mixed bag. On the plus side of the ledger, even though the instances of apnea for Gwen actually increased this time, she had good moments of REM sleep. The first time, she hardly had any REM sleep and that is the most important in the sleep cycle. Also, this sleep study showed that her apneas were predominately central in nature. That means that the breathing issues she is having are based in the brain someplace, and so a tracheotomy is unnecessary at this point.

As for the ramifications of having significant apnea spells that are centralized, that is a very fluid topic. The heart of the discussion revolves around Gwendolyn having a chiari malformation. For those of you new to the blog or who don’t remember from other times it was brought up, this is basically a side effect of prenatally developing in the womb with a myelomeningocele form of spina bifida. Type II (also called Arnold-Chiari malformation) is common for babies experiencing myelomeningocele. Basically, the cerebellum and brainstem are pushed downward. The resulting pressure on the cerebellum blocks the flow of cerebrospinal fluid (the liquid that surrounds and protects the brain and spinal cord) and can cause a range of symptoms including the ability to breath normally during rest. Hydrocephalus (a.k.a. water on the brain) is a common side effect of those experiencing a chiari malformation and its presence is exactly what caused Gwen to have a shunt put in shortly after she was born. The long and short of it is that we know she’s got a chiari malformation (all kiddos with a myelomeningocele seem to have it at some level); it’s just a matter of how significant it is and how much it’s affecting her.

But here’s the catch, four weeks after Gwen was born, they did an MRI of her brain. However, the results were inconclusive and open to interpretation. Our new pulmonologist feels that the chiari malformation is the culprit of Gwen’s apnea. So, he has asked that we get a new MRI of that area (tentatively set for September 24th) as well as a study to measure the flow of her cerebrospinal fluid to see if there are any abnormalities present. Since MRIs obviously give you the clearest picture when the subject isn’t moving (and that is a likely reason the initial one is hazily inconclusive), she will have to be sedated (and therefore will be intubated yet again) to ensure she doesn’t move for this MRI.

Now for the exacerbating part... Even if the MRI and/or cerebrospinal fluid flow study lead the doctors to feel that Gwen does have an significant chiari malformation, the course of action is questionable. Again, for those of you that have followed the blog before, you know that the possibility of Gwen having a serious chiari malformation has been raised in the past. And the “fix” for it is a decompression surgery that hopefully reduces the swelling in the area where the cerebellum and brain stem are compacted. However, there’s no guarantee that the area in question can be decompressed… Or that the decompression will in fact reduce the swelling, thereby allowing for a more normal flow of her cerebrospinal fluid… Or even if the she is successfully decompressed and the swelling does reduce that the damage already done is reversible. As a result, our neurologist has been adamantly opposed to trying the procedure in Gwen’s case because, in his determination, the risk of her going through another brain surgery just isn’t worth the reward of a possible improvement that could be marginal at best. It’s just an area that’s so “grey” in nature and his earlier thoughts were that Gwen simply isn’t in a dire situation that warrants such an invasive procedure.

So what do we know for sure? We know that drama seems to be a constant with the Gwenner. We know that on a positive note, Gwen won’t be getting a trach. And we have the solace that while so much is still uncertain, if this condition is ultimately the cause of Gwen’s troubles; it is far from a unique case. Prior to this, there always seemed to be an uneasiness about Gwen’s circumstances. We never liked hearing what a “unique” case she was. Maybe in fact, she’s just experiencing the results of something that is quite common amongst her peers.

We’ll obviously let you know when Gwen’s additional diagnostic tests have been scheduled and what the results ultimately are. Still, at this point we don’t know much else in terms of timetables or the resulting actions that will be taken.

So, here we sit on Friday and the only thing we know for certain is that Gwen doesn’t need a trach. And while the reminder of the news isn’t quite what we had hoped for, we know that thanks to your thoughts and prayers we’ll be able to make it through this situation like he have our other hurdles, one day at a time.

A Jinx-Free Entry (We Hope)

Why yes, we are slightly tardy in our mid-week blog entry. We were sure that the moment we posted another update saying we hadn’t heard the results from Gwendolyn’s sleep study yet, the phone would ring. Well, it’s Thursday and we still haven’t heard back so we decided to go ahead and post a new update anyway. Again, we can’t say for sure that no news is good news but at least until we hear otherwise, we can keep the faith that the results turned out okay. Besides, if it was a critical situation (like the previous pulmonologist felt the results from Gwen’s initial sleep study were) we would surely have received a worried call by now… Right?

Outside of the sleep study non-update, this blog entry includes a topic close to Dad’s heart… food!

Yesterday during her weekly in-home occupational therapy visit, Gwen had plain old baby food to eat. What’s the big deal you ask? It is the first time that she’s had something to eat that wasn’t pumped, thickened, frozen, chilled or somehow else altered since last October… That’s a pretty long time. She’s still only able to have it in small doses under the supervision of a nurse or O.T.. However, as they say, you have to crawl before you can walk. The O.T. listened to her lungs both before the feed and afterwards and all sounded just fine so it doesn’t look like she’s aspirating any of the food into her lungs thus far. As you can see above, Gwendolyn is a BIG fan of the eating her some baby food.

;)

As for Braelyn, she asks that you overlook the sleep-filled eyes and bed-head in her photo… But she had a milestone herself during this morning’s breakfast. As you can see, Braelyn took the initiative and fed herself for the first time today. After her oatmeal-and-fruit cereal mixture was finished off, she grabbed her bottle and (with the help of a small “tummy time” pillow) propped it up to her mouth on her own. Ah yes, she’s already figuring out ways that she doesn’t need her parents anymore.

‘Aint that a surprise... NOT!!!

Well, we suppose that’s really all we have for now. Somehow, we’re already at the tail end of July. The school year and football season will be here before we know it and our lives will become even more chaotic… But we wouldn’t have it any other way!!!

No News Is… Just That, No News

Obviously, the most popular question for the Castellanos of late is: “Have you heard any news back about Gwendolyn’s sleep study?” Unfortunately (or maybe fortunately), we have not. In a way, the delay offers the optimism that nothing was red flagged this go-around (like it was the last time) so there just wasn’t a rush to review it. Still, given all we’ve dealt with, it’s difficult to allow ourselves to revel in that possibility for too long and get our hopes up only because they’ve been dashed so many times before. Instead, we've decided to cautiously wait and pray that things work out for the best. Who knows, maybe the pulmonologist is planning to wait until our regularly scheduled office visit next month to update us on the results.

Gwendolyn has continued to make progress each and every day in the realm of her physical development. She regularly sits up, holds her head erect, turns it from side-to-side, kicks her legs and yesterday delighted us by consistently wiggling the toes on her right foot (which had been the side that seemed to be the more limited of the two). Undoubtedly, the combination of extra physical therapy sessions combined with Mom’s constant attention to her daily exercise routine is paying dividends and strengthening the muscles that she’s got movement in. Gwen even picked this weekend to echo her sister’s first word, “dada.” We were told to pretty much erase the three-month time period that Gwen was hospitalized from her developmental chart. So, it really shouldn’t shock us in the end that Braelyn and Gwendolyn each said their first word just less than three months apart from one another. The real concern is on Mom’s part as she tries to figure out when Dad is “brainwashing” the girls by continuingly saying his name instead of hers. (No truth to that rumor by the way!)

Honestly though, we’re both delighted that Gwendolyn is starting to make consonant sounds and is now putting them together. Again, given her limited oral stimulation, that’s a tremendous sign.

Both Gwendolyn and Braelyn did have a visit from Grandma McKee yesterday (as you can see from the photo at the top of this blog entry). The three sat on the couch and read books together for a while. It was a special treat because Grandma McKee has been traveling quite a bit of late. She visited friends in Idaho and then made a quick trip to Iowa just after that. So, the girls were delighted that they were able to get some TLC with their Grandma once she got back into town.

And finally, for those of you that were just waiting on the edge of your seat for this update, Mom officially drives a minivan now. So far, no depression has set in that she’s had to vacate her throne as the SUV queen!

;)

Thanks Again!!!

We wanted to be sure and pass along our gratitude to everyone that took the time yesterday to keep Gwendolyn in their thoughts.

Just to update, Mom was told this morning at about 4:30 AM that they had logged the required six hours of data on Gwen. Because of that, they released Gwen from the clinic ahead of schedule. As they are instructed to do, those administering the test weren't able to offer us any indication of how Gwen did.

As we noted earlier, we don't anticipate getting the results back from the pulmonologist this week. However, you can be certain that once we do hear back, we'll obviously let everyone know.

Here's hoping that everything turns out better than that last sleep study did!

A Last-Minute Prayer Request

We just received word that due to a cancellation, Gwendolyn’s makeup sleep study will be taking place this evening. We knew it would be sometime this summer (we had initially scheduled it for next month) but obviously we anticipated having a little more prep time for it.

With that in mind, we selfishly ask that you say a quick prayer for our little angel if you have the time. Needless to say, it would be GREATLY appreciated.

If the protocol from her initial study applies to this one, we don’t expect to hear back on the results quickly… That is unless she had a particularly disappointing evening (as she did the first time).

So, fingers crossed that Gwen has a peaceful sleep free of breathing interruptions tonight… And that we don’t hear back from the pulmonologist until next month saying that all checked out fine with little Gwendolyn Marie!!!

A Tale of the Tape

For anyone interested, here is what Braelyn and Gwendolyn measured out to after their 9-month checkups.

Braelyn:
Length – 25 inches (below the third percentile)
Weight – 15 pounds, 8 ounces (between the third and 10th percentile)
Head Circumference – 43.75 inches (between the 25th and 50th percentile)

Gwendolyn:
Length – 25 inches (below the third percentile)
Weight – 16 pounds, 4 ounces (between the third and 10th percentile)
Head Circumference – 44 inches (50th percentile)

Obviously the girls’ length measurements are a little concerning but nothing requiring an immediate look-see... We guess we can cross the basketball scholarships off the list of possibilities however. The pediatrician did say that Gwen’s figure could simply be the result of all her extra time in the hospital. That stress and anxiety tends to stunt a child. Braelyn on the other hand is continuing her “Peanut” ways... Remember, she came home from the hospital weighing just over four pounds to begin with. Still, we’ve been told that they are both staying on a constant growth curve which is a plus. So, for the next 15 months they will just continue to monitor things. If the girls reach two years of age and there is still a bit of vertical challenge present, the the topic with be revisited then.

Other than the fact that Gwen’s just getting over a small virus, all else is status quo in the Castellano Household.

Getting Back to "Normal"

Somehow, July is nearly half over and Mom's long days with the girls are unfortunately beginning to wind down. Still, she’s been enjoying every moment of her summer with Braelyn and Gwendolyn. Unfortunately, it’s been somewhat of a full “dance card” with Gwen getting two P.T. visits and an O.T. visit each week. Today, they’ve even got a regularly scheduled pediatrician visit on tap to get the week going. But for Gwen these visits have become invaluable as her progress has been immeasurable. Dad was lucky enough to have the opportunity to swing by one of Gwen’s P.T. sessions last week. As you can see from the photo below, not only is Gwen starting to sit pretty and hold her head upright but she’s reached the stage where she’s able to actually enjoy some of her therapy now.

We just secured daycare for the girls this fall. It is an at-home situation with a wonderful twist. The individual that will be watching the girls has a daughter two weeks older than our girls who has spina bifida herself. Hers is a similar case to Gwen’s but she does seem to be blessed with a little more movement than Gwen has. Because of their similar circumstances, Gwen will receive all the daily specialized attention necessary from someone who is more than use to administering it. That is such a huge deal to us because since Mom’s had off this summer and really focused on working with Gwen, her progress has gone through the roof and she’s really starting to come out of her little shell. To bring it all full circle, there are other similarities that they share… They have the same Neurologist who performed their initial operations after birth and who continues to see them each for subsequent follow-ups, they have the same in-home P.T. who will be able to see them both at the same time and pass along daily exercises that Gwen will be able to get at day care, and they even share the same pediatrician. We feel so fortunate that there will be someone with that intimate perspective who will be able to care for the girls.

Our weekend was rather mundane as we enjoyed some R & R from our just completed vacation. It’s amazing how draining it was to shuffle the girls through security, on the plane, off the plane and then back home again… It was undoubtedly all worth it but at the same time we are still trying to recharge our batteries from that little maneuver. On Saturday we did muster enough strength to go down for lunch and a walk on The Plaza. We thought it would be nice for the girls to enjoy the wonderful weather we had (not to be confused with the downpour that took place the following day). At one point we stopped and sat the girls on a bench. For some reason, we realized that Braelyn soon became infatuated with the shadow her hand was making (And check out how tightly she curls her little feet).

Mom has finally embraced the fact that like it or not, it’s time to get rid of her beloved SUV so that we can get a mini-van. Nothing says “You’re totally getting old” quite like a vehicular unit of that ilk but the time has come. Hopefully we can move her Sante Fe soon so that we can get the van in place (and the extra room it will offer) by the time school starts up again next month.

Finally, kudos to Mom for installing that cool tracking device in the purple box on the right of our main page… It’s just amazing for us to see all the places that folks log into the blog from so they can get updates on our two beautiful girls!!! It is even more humbling to realize that there are so many of you that are still interested in Brae Bear and The Gwenner.

Talk to you later…

The Wrap on Our Flight Home

Our vacation officially ended when our 737 touched down at Kansas City International Airport yesterday. The flight was fairly uneventful. The bad news is that Gwendolyn is the only one that slept through the trip. However, Braelyn did find some creative ways to occupy her time...

Braelyn turns a bag of peanuts into an impromptu rattle...

... While Gwendolyn turns Mom into an impromptu crib.

Braelyn catches herself up on the safety features of our plane.

Cue Cheesy Airplane Overhead Speaker: "We're beginning our initial descent into Kansas City. At this time was ask that you please return all seats, tray-tables and babies to their upright and locked positions."

Looking Back

Well, our vacation is complete but we came across some more photos that we thought you all might enjoy. It was a fun trip to Florida that we all REALLY enjoyed. Hopefully Braelyn and Gwendolyn will be back to visit again very soon!!!

Braelyn and her sister slept through most of their first airplane trip...




... But they were awake just in time for the landing...



... And to get a new doll from Mommy.



Brae Bear knows that her future's so bright, she's got to wear shades!

This photo encapsulates the majority of Gwen's first beach experience...

... But at least she was awake for parts of it!

Braelyn eventually warmed up to the water... really, she did!

When the beach trip was done, Braelyn fell fast asleep while Gwen and Mom shared a frozen treat...

... But Braelyn eventually got a spacial treat all her own once she woke up.

Mom gets ready to hit the high seas... And learn the history of the sailing term "Stack High In Transit." The things one learns on a sunset cruise.

Anchors Away

Mom & Dad took a "date day" on Monday. While Braelyn & Gwendolyn spent time with their Grandparents, we went to St. Augustine. It really was a lot of fun. As you can see, we even took a sunset cruise on the Schooner "Freedom."

Beach Day

Thankfully, Mother Nature helped us out a little on July 4th and kept it dry in the morning. So, we were able to bring the girls to the beach for the first time. Unfortunately, Braelyn enjoyed that experience a little more than Gwendolyn did. Still, they both got to hang out in the sun, the surf and the sand... Especially the sand!!! We're still not sure if there was any in the ocean after we left because it surely made its way into every nook and cranny of the girls.

Oh well, so it goes... Enjoy the twins' quick beach photo album!

Gwendolyn spent a lot of time preparing for her trip by reading up on the beach...

But when she and Braelyn went to the water for the first time, let's just say the experience wasn't all that pleasurable!

Eventually, Braelyn warmed up to the idea of going into the water.

But for the majority of the time, the girls just hung out in their cabana.

At least Gwendolyn had a smile on her face when it was time to leave the beach!!!

Studio Pictures From a Wet Florida

Well, since all three cousins are together in the Sunshine State, the Castellano clan decided to go for a studio photo session in between Florida showers. Because the rain postponed Braelyn & Gwendolyn's initial trek to the beach, we thought we'd share some of our favorite shots from that studio sitting now... Hopefully we'll have some pics to post of the girls actually vacationing tomorrow. ENJOY!!

Three grandkids in the span of two days... Who would have thunk it!?!?!?

Yep, this one is straight from your Olan Mills 1970s catalog photo package but we still LOVE it!!!

Outside of Gwendolyn holding an ice tea as she lounges in her beach chair, this picture is PERFECT!!! (Let's hope that there's a REAL beach photo in their near future.)

The Castellano cousins (At least Ava realizes that she's suppose to smile when the camera's flashing... We're still not sure what Braelyn and Gwendolyn are doing!)

Check out our two big girls - Braelyn McKee & Gwendolyn Marie. (For the record, it looks like our "runt" Braelyn is just a notch taller than her sister now.)

And Away We Go!

Florida, here we come!!!