Waiting on the warm weather…

It is kind of surreal being back in the house that I grew up with from the time I was 5 until the time I left for college (and for a brief stint after the Northridge earthquake of ’94 after I lost my apartment).  Even though I haven’t been here in one year, it always feels like I have never left, and you go right back into that same routine.

Our visit so far has been a good one, with the expected hiccups along the way.  Ethan broke his glasses two days before we were to leave, but he didn’t tell us until I just happened to notice the tape on the side during the fundraiser the night before.  So, we were able to go to a one-day place, and we bought him a new pair of glasses here.  

Abigail was really cute last night at the Seder.  I think she developed a little crush on my 20-year-old cousin.  She would not leave him alone!  It was adorable.  She even said that he was “cuter” than her “boyfriend” in preschool.  Where does a 5-year-old pick up on this stuff?

Hannah hasn’t been herself yet.  I miss my happy-little-baby.  I think the combination of having a cold, an ear infection, jet lag, many new people in three days, and not being at home in her routine has gotten to her.  With the exception of me and Daddy (and our kids), she just doesn’t want anyone to hold her or even play with her unless we are around.  I think she has cried more in the past three days than she has since she was born!

Today is a mellow day, which is good.  I have to run to the store to pick up an outfit for the easter egg hunt at my parent’s golf club for tomorrow.  I knew there was a dress code, and I got everything for the kids, but I totally forgot to bring something for me.  I guess jeans are a no-no there. 

I have been neglecting my emails, on purpose, as I am trying to not be so focused on “my mission.”  But I do wish I could spend at least an hour or so just reading everything that has come in!

Abigail’s Ears and Encopresis? Hannah quick check.

What I thought was going to be a simple 5-minute well-check for Abigail turned out to be a bit more complicated.

Abigail’s ears still look “miserable,” which I knew, so we will likely be having a third tube surgery some time soon.  Also, he wants us to get Abigail an abdominal xray when we get back because he thinks she may have encopresis.  It all fits, as she has been complaining about “hard poopies” for the past few weeks and she has had some accidents, even just minutes after we ask her if she needs to go potty.  So we may be adding some Miralax to her diet.

Our pediatrician also did a quick physical check on Hannah and noticed that she is starting to develop fluid behind her ears again.  If this turns into a full-blown ear infection, that will be what, the second one in as many months?  She has had a runny nose for the past few days, and if it continues for a couple more days or if she gets a fever or tugs at her ears, he gave us a prescription for antibiotics that we can use while we are in CA.  He checked out her spleen and liver, but for the first time, she was pretty uncooperative, as she wasn’t feeling very good.  I didn’t get the impression there was any change in the size, however.

So, in the middle of all Hannah’s multitude of tests, we have to add Abigail’s ear tube surgery plus her abdominal xray to this mix.  Boy, our insurance company is going to be busy for the next couple of months with u!

I’m exhausted…

Okay, I think I hit that proverbial wall.  You know, when your body is just so tired you just want to be lazy and sleep? 

During Hannah’s 2-hour Cerezyme treatment, I fell asleep for almost an hour of it.  I remember watching TV with her sleeping on me and the drape half-open around our area.   I woke up to a totally different show on the same channel and the drape wrapped completed around our area.  I hope I didn’t snore!  LOL  (Hannah did great at her treatment – slept through all of it!)

Last night I slept for over 5 hours straight.  The monitor didn’t go off once.  Yay!

Tonight, I am giving myself just one more hour to go through emails and get some stuff done and ready for the Chic-Fil-A fundraiser tomorrow.  I have NO idea what to expect or what I am supposed to do.  I am so thankful for my neighbor who set this up and to all my friends and neighbors who have volunteered to help and get the word out. 

36 hours until we leave to visit my folks and extended family in SoCal.  It has been a year since we have been back there, and it will be the first time almost all of them have met Hannah (except my folks who came here right after she was born).

Feeding update, developmental therapy, and Abby’s tubes

Busy day today…

Hannah had her developmental therapy session today.  She absolutely loves Jenny, our therapist.  Jenny was so impressed that Hannah actually sat up and balanced on her butt for almost 20 minutes without falling.  My baby girl is getting the sitting thing down — she is even starting to put her hand out to balance if she falls, but that is something we need to work more on.  Hannah also showed off how she loves to stand (holding on to something) for a couple of minutes as well.  She gave us suggestions on working with her to get her knees into a crawling position as well as to continue working on the back-to-front rolling over.  I love working with her because she gives me suggestions that seem really easy to implement, and I do work with Hannah at least two to three times each day on her developmental therapy.  The success is starting to show!

As for eating, I replaced 2 ounces of water with 2 ounces of apple juice in 3 of Hannah’s formula bottles.  She had absolutely no problems with that.  We also put applesauce on her tray at dinner with us, and she just played around with it and the spoons & toys on her tray.  A bit of it got into her mouth, and she would give a weird face, but she didn’t completely freak out. 

Then, and this is big, we gave her a biter biscuit.  She was munching on that thing for about 10 minutes.  In and out.  She wasn’t really sure if she liked it, but she kept chewing on it.  She chews on everything, so this was a perfect idea.  I was staring at her, literally the entire time because I was afraid of choking.  But she was fine.  She only ended up eating maybe about 10% of it, but at least that is a start.  The funny thing was when she got a bigger piece, maybe about 1/3 of a cm, in her mouth, and she started screaming and crying.  She would not let it go into her mouth more! 

But thanks to so many of you, I got some wonderful suggestions that we are going to try out.  Thank you!

Last, and definitely not least, my dear Abigail.  It looks like she is going to have to have her third set of tubes put in.  One tube is basically almost out, but the other one is completely blocked and nonfunctional at this point.  Sadly, she still has middle ear fluid.  So, we are going to wait 3 more weeks and then make the decision.  I’m actually glad it isn’t right away because we just have so much going on with our trip to California for Passover and Hannah’s swallow study.

My sleeping girl

It is weird being in Vegas this time.  We usually go twice a year to visit my inlaws, and each time, Daddy and I set aside a certain amount for gambling.  You know, the amount we are willing to lose without feeling guilty.  This year, we knew we couldn’t gamble because of our current financial situation.

This year is different.  We’ve been here 2 days already, and I haven’t even touched a slot machine.  What is weird about it is that I have absolutely no interest in playing or gambling!  No desire, whatsoever.

My priorities are so changed now.   But I never really realized how changed they were until we walked by the slot machines again after breakfast, and I just really didn’t even care about playing, even a little bit. 

9 AM in the morning here, and we are hanging out in the hotel room.  Hannah is sleeping, taking her nap, after waking up at 4:30 AM again (she is still on Texas time, 2 hours ahead).  I’m on the computer, and Daddy is just relaxing.  It feels so GREAT to just relax and breathe!  We’ll catch up with the inlaws and Ethan and Abby in a couple of hours.  Heck, I may even take a morning bath — I haven’t done that in so long!  We will head on over to my inlaws house for a barbeque in a couple of hours.

Hannah looks so peaceful.  I admit though, these are the times that I wonder what the heck is going to happen to her.  What will she be like next time we come to visit the inlaws? 

I know, stop thinking about it, and go to a bath…

Hannah’s first plane ride!

We are here in Vegas. (No, not “Vegas” with the flashy lights, but the residential side of Vegas where my inlaws live – it is so funny how everyone assumes you are going to “Vegas” when they ask!). My inlaws put us up in a hotel not far from their house to give us a break, and they took Abby and Ethan for the night (and their cousin L. too!). We have Hannah with us here.

Hannah survived her first plane ride with absolutely no problems! She totally charmed the flight attendant who kept making googlely faces at her. We (purposefully) sat in the last row on the plane, which was great because Ethan and Abby had a rough flight (sibling stuff).

I do have to share a hysterical moment. Because we preboarded and were all the way in the back of the plane, I had Ethan and Abby and all the carryon with me, and Daddy had Hannah so he could drop the stroller off at the front of the plane. Well, Hannah had a “poopie” butt, so Daddy asked for the diaper bag, and I handed it back to him (over the heads of a few other passengers in between us). Fifteen minutes later, he still wasn’t back yet, and the plane was full of people finding seats. Apparently, Daddy had put on a size-3 diaper instead of a size-2, and Hannah exploded through the diaper, through her clothes, and all over the stroller and Daddy’s arm right as they were walking down the ramp – in front of everyone! Everyone was helpful he said, but THAT was Hannah’s first moments on an airplane — in the bathroom getting a complete change and cleanup! Have to laugh.

We borrowed a playpen from my inlaws, but Hannah didn’t like sleeping in it too much, as she woke up at 4:30 AM local time, which is her normal wakeup time in Texas time. I brought her into bed with me and we both dozed off until about 6:30 AM local time until she decided she was really too hungry to wait.

This morning, we have to make a Target run, as mommy forgot a LOT of things when I packed. Burp clothes, few warmer clothes (didn’t realize it would be in the 40s to 50s in the morning!), infant socks, etc. My inlaws are going to take the kids to the BX to get them some warmer clothes too, although they do have a couple of pants and long-sleeve shirts. Don’t know why I totally assumed it would be warmer here — why the heck didn’t I look? (That is so not like me).

Anyway, after Target, we are going to meet up with everyone and take it from there.

Oh yeah, I met my new niece last night. She is about 8 weeks old, I think. She is so tiny!! Even though she is already 9 lbs and Hannah is 17 lbs, Hannah looks HUGE next to her! Lots of pics today

Power of positive thinking

I’ve been feeling very down and overwhelmed these last few days.  I haven’t been taking care of myself at all…I’m at my highest weight ever, I have started really not caring about what I look like when I go out in public, and I just don’t pay attention to the things I need to do for me.  I’ve spent so much time focusing on Hannah’s health, creating awareness for GD23, making sure Ethan and Abby have a normal life, etc., that I really have pushed me aside, willingly.  Even my husband is feeling the stress of really not taking care of himself either, with the exception that he has to go to work everyday and gets to use that distraction.

I’m not sure what is different about tonight, but I’m feeling like I really need to change.  Could be that we are going on vacation to visit my inlaws in a couple of days (and they are putting us up in a hotel and taking Abby and Ethan for the nights!), and it will be a great distraction from everything going on here.  Could be that I’m just beyond exhausted and just want to change.

So, when we get back from seeing my inlaws, my husband and I decided we are going to have to start focusing more on us, especially getting ourselves healthier.  If we aren’t healthy, how are we going to fight to keep Hannah healthy?  We can’t afford to get sick, you know?

When we get back, I’m going to work on creating a weekly menu and focus on eating healthier for him and I.  The irony is that Ethan and Abby are too skinny, so we need to keep them on regular foods (and Ethan still has to drink an Ensure every day because he needs the calories). 

One step at a time…

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