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 🙂

We seem to be getting into a routine already with Hannah’s Cerezyme enzyme replacement therapy treatments.

I leave the house around 7:45 AM or so, drop Abby off at preschool, and then head downtown to the hospital. The last couple of times, I have gotten there around 9:30 AM. We park in the clinical care buliding, and then walk across the bridge to the hospital tower. Up one floor on the elevator, and then we go to the Infusion Center check-in area. The lady at the desk already recognizes me and pulls out the paperwork for me to sign, every time.

We head into the Infusion Center after getting our paper work, and we end up in the same “room” (area with a drape to make it private). I put my stuff down, and the nurse hands me a bag with the IV, tape, etc., and sends me directly up to the 10th floor, the “magic” nurse who gets Hannah’s IVs in so easily (and on the first try today!)

Back down to the Infusion Center. I put in the Wiggles DVD, and Hannah gets glued to the Wiggles theme song immediately. They come in with her Cerezyme and a saline bag, and they start the Cerezyme drip and hook her up to the blood pressure machine that takes her BP every 20 minutes or so. We watch the Wiggles (same DVD every time, need to get more!), and about 45 minutes into it, Hannah falls asleep. Admittedly, I dozed off for about 10 minutes or so myself. I usually spend the rest of the 2-hour Cerezyme drip time and 30-minute saline drip time with a sleeping Hannah on me, cuddling her, and checking my text messages. I don’t mind it — it is guilt-free cuddle time!

After the drip is done, they take out the IV, and we are done! Today we didn’t have to wait the extra 30-minutes to see if she had a reaction since we have already have had two successful treatments without complications (thank you God!).

Then we head back home. We usually get home by 2:30 PM or 3:00 PM depending on traffic, just in time to get Ethan off the school bus.

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…

Michelle over at 5 Minutes for Special Needs wrote this great article, and even though Hannah isn’t considered “medically fragile,” there were some very good tips for us in there since her diagnosis is so rare and most doctors don’t know what to expect with it.  Also, worst-case scenario, she may need a trach to breathe. I wanted to jot down some of the tips to keep them handy for me.  But if you do have a child with medical issues, definitely go over there and read this full article.

Make up a slim, easy-to-carry medical records folder for your child.  A plastic folder with clear plastic sleeves for slip-in pages works really nicely for this purpose. It should contain pages with provider names and phone numbers — including home-health, pharmacy and medical supply phone numbers, your insurance information, a concise summary of your child’s medical history, a list of your child’s allergies and your child’s medications with their dosages, copies of any prior authorizations from your insurance provider for medications, supplies, services, or procedures and a listing of your child’s medical procedures and their dates. Carry this with you everywhere that you take your child.

Contact the fire department that would respond to your residence if you called 911. Let them know you have a medically fragile child and provide them with information about your child’s medical needs. Especially important information would be letting them know if your child has a trach, airway issues, or a heart condition. Some fire departments will provide specialized training to their department if they know they have a child with a trach in their response area.

Pack a “Grab and Go” bag in case you find yourself on a midnight ambulance run.   Contained a change of clothes for my husband and myself, a small bag of toiletries, and one of each of our daughter’s specialty medical supplies — things we quickly learned that most hospitals wouldn’t have in stock. In our case, these items included a replacement trach (they never had the right size), a replacement G-tube (same story), a can of her specialty formula, oral syringes that fit her G-tube port or adapters to add to the hospital syringes to make theirs fit, a decompression tube with an extension to fit her G-tube, a small postal scale for weighing the powder to prepare her formula so we could be certain it was being prepared correctly, and three days worth of any of her medications we knew that the hospital wouldn’t be likely to have on hand. Twice a month we rotated out everything in our “Grab and Go” bag to make sure everything was up-to-date, washed, and ready to go. Make it a rule to NEVER “borrow” items from your “Grab and Go” bag.

Carry an emergency supply kit with you when you travel.  Your kit should be as compact as possible and contain the essentials you would need to change out a trach, a g-tube, etc., or to deal with a failure within a critical piece of medical equipment. Our kit was a shoulder bag containing four mini-kits, each in a separate gallon zip-loc bag: A trach kit, a G-tube kit, a pulse ox kit, and a suction kit. Each bag contained the necessary supplies unique to that kit, along with a 8×10 laminated card with the name of the kit on the card in large bold font. Each kit was assigned a different color for the laminated card so that it could be easily spotted and pulled out quickly in an emergency. To avoid out-dates, we rotated out the entire contents of each kit every month.

Get Certified in Pediatric CPR and First Aid.   A good place to find out information about how, when and where you can find training in pediatric CPR and first aid is through the company that supplies your durable medical equipment. Another option is through your local childrens’ hospital. If your child has a trach, make sure you receive specific training on how to provide pediatric CPR to a child with a trach and request to be provided with an ambu bag with a trach adapter. Make sure it fits your child’s trach and ask for training on its proper use.

Make sure you always have a CORDED phone on each floor of your house plugged in at all times.   Do your best to position the phone as close to the area where you spend the most time with your child as possible. The last thing you want to have do when you have an emergency is to run around looking for a misplaced handset or deal with a dead battery. Another option: Keep a fully charged cell phone on your person at all times.

If you have a multi-story home, consider investing in a wireless home intercom system.   Without one, you may not be able to get help when you most need it.

Have a CPR station on every floor of your home.   An alternative would be to have a portable one that you move with you to each room where you are spending time with your child. It should include a hard surface for providing chest compressions — the floor is fine, or if your home has thick padded carpeting, a small sturdy board will work (ours is a mini ironing board with the legs removed). Keep a bag with your CPR station containing a flashlight for helping to spot airway obstructions, a laminated card of pediatric CPR guidelines, a laminated card of 911 emergency directions to your home, and if your child has a trach, an emergency trach kit (a replacement trach and supplies necessary for changing out a trach).

There were more in-depth suggestions suggested by Michelle over at 5 Minutes for Special Needs who wrote this great article.  I strongly suggest anyone in this situation head over there and print out the entire article.

At the fundraising meeting a couple of nights ago, a good friend brought up that they were worried about us financially, and they felt that the fundraiser should be focused on Hannah and not on raising funds for research.  They also felt that people would be more willing to donate to a family instead of a “cause” at a neighborhood event.

After talking to a few long-time friends about this, they agreed that these friends were looking out for us, probably when we weren’t looking out for ourselves.  

It made me really think over the last couple of days (like I haven’t been doing that enough lately — see what happens when I slow down?) about our financial situation.  Yes, it sucks.  Now that I am no longer bringing in an income, we are living off our savings to make up for that income.  I know it won’t last forever. 

I have NO problem with the fundraiser and raising money for GD23 research, because that is the only shot we have of saving Hannah’s life.  Yet, I don’t want to be considered a personal charity case, either.  I don’t know why it is so hard for me to accept people wanting to help us personally like that.  But are we being irresponsible parents by trying so hard to raise money for research and not thinking of ourselves and our family?  Yet, if we do accept money for ourselves and we lose Hannah, I’m not sure I could handle the guilt of thinking that we didn’t try everything we could to save her.  Then what about Ethan and Abby’s future if we are forced into a more serious financial situation? 

My brain hurts.  I wish I knew what to do, what was the right answer.   Objectively, if it was someone else’s situation, I would tell them they had to protect their family first.  But in my heart, I don’t know if I could handle the guilt if we lose Hannah because we didn’t try everything we could.

When Hannah’s OT suggested a swallow study, it didn’t make me nervous at all.  Because of everything else she was doing okay, I really felt that it was likely just another “Hannah” issue and not GD23 related.  I mean, they were concerned that her laryngomalacia (poor throat tone) was GD-related, but it turned out to be old-fashioned laryngomalacia, and she outgrew it. 

But then I posted about it on facebook, mostly to learn what the procedure was.  (Those of you who are my friends on facebook may have read the comments I’m about to mention).  Two moms of GD2 children that have passed away, and who I have become friends with and have been a huge support to me, both made comments that this is what their kids had to deal with as well, and they both are convinced this is GD-related. 

I know they both were trying to be there for me and prepare me, and believe A. and L., I have NO ill-feelings towards you for it, as you two have been such huge avenues of support for me. 

But since reading their comments and reading the email from my pediatrician who wants to get this done ASAP after hearing the OT’s recommendation, I can’t shake this feeling that it may be GD-related, and that we are heading down a GD2 road.  

After tot shabbat last night, we went out for dinner.  I can’t tell you one conversation that happened during that time, because all I could thinking about what Hannah.  She sat in her high chair, and the entire time, I just wanted to touch her and look at her.  I completely zoned out everything else until the end or when I had to. 

I even tried blogging about this last night, but I couldn’t stop myself from tearing up each time I started.  

Please, please don’t let this be GD2 related.  I’m not ready for this yet.  I’m so not ready for this.