Ethan and Abigail are home for a 4-day weekend.  It feels like they just had their 2-week holiday break!

Even though the chaos in the house gets a bit overwhelming when I have all the kids home for multiple days, I have really seen a huge change in Hannah when they are here.  Ethan and Abby shower her with attention, love to play with her, and make a strong play to include her near them at all times.  We never have to ask them to do that, they just do it.

During the holiday break, they spent a lot of time with Hannah.  Every day, multiple times a day.  I really think Hannah thrived on it because … well, let’s face it, they are more fun to be with than Mommy and Daddy are!

Hannah seems to thrive on the attention from them too.

With Ethan, she just lights up when he comes to her.  I never get a smile that big unless I’m carrying her bottle or she is tired and wants to cuddle.  He knows her limitations, but still tries carefully to push her and teach her things (like putting things “in” or throwing a ball, both of which she has not been able to do yet.)

With Abigail, it is different.  She is very motherly with Hannah and protective.  Making sure that Hannah’s toys are near her, making sure they are turned on.  Always wanting to be her “friend” and play her toys with her as Hannah watches and learns.

I’m thankful that Hannah is well enough these days to be able to spend time with her brother and sister like this…without machines, without significant problems, etc.  Just a baby girl and her big brother and sister.

In addition to get Hannah’s new braces tomorrow, we are meeting with Dr. V, Hannah’s gastroenterologist, tomorrow afternoon.  It is just a followup for her reflux, but I think I’m going to take advantage of this time to discuss Hannah’s feeding regression issues with him.

I’ve become quite nervous about giving Hannah finger foods now such as her goldfish, Vienna sausages, and cheerios.  For whatever reason, the last few times with these, 50% of the time she has choked/gagged on a small piece which led to a gagging episode (nothing requiring 911 or anything like that, just the need to hold her until she calms down).   She seems to have no problems with the Gerber yogurt melts, cheetos, ice cream dots, and Gerber air puffs.

The question we have is with this “hypersensitive defensive gagging reflux”…. is it just going to get worse as her disease progresses or is it something she has to get used to to move forward?

I don’t expect Dr. V to have the answers on that.  That is something I will ask Dr. Schiffmann about.

But Dr. V may be able to give me more insight into her feeding in general, which currently is 5 bottles a day with 1 pediasure, 12 ounces of milk, and 10 to 12 jars of stage 2 baby food – about 1000 to 1200 calories a day.  From what I have learned about nGD, Hannah is hypermetabolic (wish I had that problem!) so the fact she hasn’t gained much weight in 4 to 5 months is not that surprising, and she is still on her “curve” according to Dr. B., our pediatrician.  But at least she hasn’t lost any weight and is gaining in inches.  23 pounds, 30 inches.

I’m not sure that holding off on her finger foods like goldfish, cheerios, and cheetos, are the best thing for her.  I just know that she hasn’t had any more gagging episodes since we have held off on them.

One of the hardest things with this is not being able to move her forward in skills because of my fear.   I admit that I do treat her with “baby gloves,” but I just don’t want to make things worse, you know?

Yes she is!    These past two weeks have been absolutely amazing in terms of a developmental spurt with Hannah.  I had been holding off sharing it because it just seemed to good to be true, and I didn’t want to jinx it.  But she is doing these things more and more that I really believe that she finally has “got it!”

• Initiation. Hannah FINALLY has figured out that if she wants to get something that is more than a few feet away from her that she can crawl over to get it!    Many times she has crawled to her favorite toy table, favorite toys, and even crawled over to Daddy and pulled on his chair while he was working at his desk.  The days of being able to leave Hannah in a spot and go do something for a couple of minutes (like make a bottle) are over — she is a mover now!
• Crawling. She can now go 5 or 6 feet crawling on all fours now.    It seems now every time she wants to move somewhere she STARTS with a regular crawl instead of a commando crawl!  She may end up in a commando crawl within a few feet of crawling because she gets too tired, but she is definitely on all fours now!
• Pulling to stand. Many, many, many times now she has crawled over to something like the ottoman, couch, or Mommy or Daddy and pulled herself up to a stand!   The first time Daddy and I were talking about something and Hannah was lying near the ottoman on the floor with a toy.  A couple minutes later, she is standing up holding the ottoman and grabbing her pacifier off the top of the ottoman!  We were stunned, and I almost started crying because I was so happy.  Then she did it again, and again, and again.  She definitely can do it on her own.
• Cruising. She is also mastering the art of cruising too!  She cruises along the couch, along daddy’s and mommy’s legs, around a table.  She has even figured out corners and curves.
• Holding her own bottle. We have been trying to teach her to feed herself with her bottle for almost a year using those Avent bottle holders.   Within the past couple of weeks, she has not only figured out how to hold it but to maneuver it to get more food.   You can’t imagine how awesome it feels to just be able to give her a bottle, and she will feed herself.

It has been an absolutely amazing couple of weeks with her.  Within less than a month we went from an immobile child who would never try to move anywhere even if she wanted something (she would just cry until it was brought to her) to a child who is always on her feet, always on the move, and doesn’t like to be tied down to something (like her exersaucer, those days are now numbered!).

This video was taken the day after Christmas when she first started crawling to toys she wanted to go. Before this, she NEVER would initiate movement outside of a couple of feet to play with a toy or get something. THEN on top of that, she pulls herself to her knees to play!  She has done so much more since then that I haven’t even taken video of it yet, but I definitely will!

Right off the bat, I am so incredibly grateful that Hannah has such wonderful doctor’s in her corner.  Dr. Roy, her ENT, and Dr. B, her pediatrician, have been emailing back and forth (CCing me) about getting a handle on these choking/gagging and hyperventilation episodes that Hannah has now.   She really has the best of the best, and everyone that Hannah has on her medical team really is so wonderfully caring!

Out of that discussion, it was decided that we get a pulse oximetry machine to find out if Hannah is actually desaturating (oxygen dropping) during these episodes so we have more to work with in terms of pinpointing where we go from here.

Instead of rewriting my thoughts on the situation, I am going to just copy/paste what I sent to them:

It seems that we are dealing with two separate but related items.

1.  Tantrums.  Probably normal toddler tantrums, but unfortunately she seems to lose control with her breathing when they happen which is when we get the hyperventilation episodes.   Most of the time this only happens when she is in the car seat and we are driving somewhere.  Even with the DVD on (which buys us time), she just doesn’t like to be restrained.   Once we take her out and calm her down, she is fine and has very little residual breathing difficulties – takes no more than 15 minutes for her to be breathing completely normal again but many times it is just a couple of minutes.

2.  Panic attacks (for lack of a better terms).  This is when we mostly see the breath-holding spells and uncontrollable gagging problems that I mentioned earlier this week after seeing Dr. Schiffmann.  These usually are the result of her feeling like she is choking on something or when she gets really scared (the latter doesn’t happen near as often).    Last night she had another breathing attack which started when she awoke from sleep from what we think was gagging on her congestion (which happened a few months back if you recall).  We did use the oxygen because it took almost 10 minutes for her gagging sensation to stop and another 90 minutes until her breathing was completely back to normal.  She never started to turn blue.

Outside of these times, her breathing is perfectly fine all day and night (except for snoring these past couple of nights, most likely due to congestion).

She is exerting much more energy these days, as she has finally learned to crawl on her knees (for about 5 or 6 feet)…we think that she just does not like to be tied down and restrained anymore now that she is has experienced this mobility, which we think is why we are having more tantrums in the car seat on long drives (more than thirty minutes).

Even though I know they are both neurologically based, I believe the tantrum triggers are behavioral in nature whereas the gagging/choking attack triggers are neurological in nature.  I can’t be sure, but this is just what my “mom feelings” are telling me.

We will see where we go from here…

Our developmental therapist, who we see each Friday afternoon, told us that she was changing jobs within ECI.  At first I was excited for her because this was something she wanted, but then it hit me that we would lose her as a therapist, as she would no longer be doing this anymore.

Before I even brought it up, she told me that she had talked to her supervisor earlier that morning and told her that she would only take the job as long as she could keep just one client (out of her 30+ clients).   Apparently this one client had totally captured her heart in a way that no other client had, and that she felt such a connection with that child and their family?

That one client?  Hannah and our family.

I was so excited to be keeping her and just so touched that she cared about Hannah so much as to hinge her job change on her.  Fortunately, her supervisor agreed, and we get to keep Jenny, our developmental therapist!

This video below was taken a couple of months ago with Jenny, before we left for the NIH.  You can see how hard my little miss Hannah works.  She gets so winded, so quickly, but she keeps going.  After looking at this video again, Hannah really has progressed quite a bit since then.  She is able to do a pseudo commando-crawl now for about 4 feet or so and even tries to get on her knees while she does it!

Her smile of accomplishment at the end of this video just embodies Hannah’s whole personality!