Lots of updates!

Zadie had her bronchoscopy/sleep endoscopy in March at CHOP.  Dr. Javia said her airway looks great, with no obvious issues!  This is good news, but also bad news in a way.  At least if there was an obvious issue, there might be an explanation for her obstructive sleep apnea (OSA).  But, as it is, there are no clear reasons.  Dr. Javia did say that her tonsils were bigger than the last time he saw them (which was when he removed her adenoids.)  That's the last possibility for a cause for her OSA, other than just a hypotonia of her airway, which is something that can't be surgically corrected, she'd just have to grow out of it.  We are taking her to see him this coming week so he can look at her tonsils again and think about having them removed.  We'll be pretty upset if she has to go under for another surgery, when he could have taken her tonsils out when he was in taking out her adenoids in September, but at the time, he didn't think it was necessary.  Dr. Javia also said that there is the possibility of decannulating (removing the trach) and putting Zadie on CPAP.  We are very interested in this possibility.  I can't imagine it will be easy to get her to wear a mask on her face to bed, but I know other kids do it.

A couple of weeks after the CHOP visit, Zadie developed what looked like a pimple on her belly, right under her Gtube site.  It got bigger and redder and I ended up taking her to the doctor.  He took a swab of the pus inside and put her on antibiotics.  It turned out to be a staph infection.

Staph infection by Gtube

She ended up having a reaction to the antibiotic, Bactrim, so we stopped that, but her pediatrician felt that she'd been on it long enough and it was ok to stop.  

Red cheeks - reaction to Bactrim

Rash on chest that spread everywhere - reaction to Bactrim

Meanwhile, she was weighed when she went to the doctor for the staph infection, and she had gained weight since January, when she went to see the GI!  Between the weight gain and the fact that the Gtube site was getting yucky (and, I imagine, contributed to the infection), we decided to pull out the tube.  We waited until morning so that her stomach was empty, and just pulled it out.  It was a very exciting day.  I wasn't sure what we'd have to do to keep it from leaking, but it closed up very quickly, within a few hours, and we never had any leakage from her stomach.  Since she had some granuloma (scar tissue) built up around the site, it's not looking the prettiest, but I'm hoping as she grows that the scar tissue will lessen and be less noticeable.

One tube down, one to go!

In other news, Zadie has had two evaluations with the child study team from the school district so far.  One was with the speech pathologist and the other was with the learning consultant.  From what I understand, she did very well in the evaluations, which is great, but it also means she most likely won't qualify for the district pre-school.  It is pretty impressive that a kid who has had so many factors against her barely even has a speech delay.  Both Pierre Robin Sequence and having a trach are major causes of speech delays and issues.  But she is doing really well!  I'm back to work at the daycare now and when her nurse went on vacation last week, I took her to work with me.  Even though the class I have is a little younger than her, she wanted to stay with me and she did very well with the whole preschool/daycare thing.  She loved wearing her backpack and having a lunch box and she loved playing on the playground with the other kids.  One way or another, by the fall, I would like her in a preschool so that she gets out in the world!  She'll be turning 3 next month, so her speech therapy with Early Intervention will end at that point.

She's currently obsessed with Frozen, just like every other little girl in the world.  She's going to have breakfast with Elsa tomorrow morning, which should be a lot of fun!

I'll leave you with a picture of Zadie and her big brother and baby sister from a photo shoot we did about a month ago.  Super cute!

Jonathan, Beatrix and Zadie

Early Intervention transition

It's hard to believe, but Zadie will be 3 years old in less than four months!  Since Early Intervention only covers children until they're 3, we had the option of getting her evaluated to transition to the school system for preschool.  We decided to see if she qualified.  We had the initial meeting with the child study team for the school system last week, and they agreed to do a psychological, social, educational and speech evaluation on her.

We're not sure whether she will qualify, since she really is doing quite well, with speech being her only issue at this point, but her medical issues may help her get qualified.

In nursing coverage news, the insurance company approved Zadie's nursing hours until April, when they will be reviewed again.  They usually approve in six month increments, so I'm not sure why it's a shorter period before another review.  I do wonder if it has to do with the bronchoscopy she'll be having in March; they might be waiting to hear the results of that.

I had posted this on Facebook and haven't mentioned it here yet, but Zadie's GI doctor has discontinued her overnight feeds!  She weighs over 30 pounds now, which is around the 50th percentile.  This is amazing progress considering just over a year ago, she was in the 5th percentile for weight.  We have to make sure that she at least maintains and ideally gains some weight in the next month or two.  If she does, we have the option of completely removing her feeding tube!  This is such exciting news!  We will most likely keep the feeding tube for at least some time, since she still has the trach and will be having procedures and possibly surgeries in the future.  The feeding tube is a very good thing to have at times.  I'm really proud of how far she has come.  When she was born, she couldn't even suck from a bottle, and there were several months where she took nothing by mouth.  Just 2 years later, the fact that she's thriving without the aid of the feeding tube is really remarkable.

Zadie's current favorite word is NO and her current obsessions are turning lights on and off and closing doors!

Early Intervention Annual Review

Zadie had her annual review yesterday for Early Intervention.  Early Intervention is a state program that is designed to help kids with developmental delays catch up in time for school.  She's been receiving services through EI for over a year now.  She gets speech therapy and occupational therapy.  We had two meetings to update things yesterday.  During the first one, a test called BDI (Battelle Developmental Inventory) was administered.  The therapist asked me a bunch of questions about different things that Zadie could or couldn't do and gave Z tasks to try to do, like stacking blocks and using nesting cups.

Little Z did great on the test!  She improved greatly since the first test was given over a year ago.  All of her scores improved.  In fact, based on that test alone, she does not qualify for EI.  However, since she has the trach and the related speech delay, they used a clinical assessment to determine that she is still eligible to receive services.  She'll continue receiving speech therapy once a week and occupational therapy will be reduced to once a month.  She babbles a lot and she is starting to say words.  The three big ones right now are mama, dada and baba.  She is starting to mimic sounds we make, and she said "duck" yesterday with the therapist while looking at a book with ducks.  She's still signing pretty regularly and still picking up new signs, so all in all, she communicates pretty well.

No news is good news...

I realized I haven't really written an update about Zadie recently.  The main reason is because she's doing really well and there haven't been any major developments.  She was sick, but seems to be just about over that by now.  She actually started getting sick the day before Jonathan's birthday and I ended up having to take her to the doctor the day of his birthday, which was also the day of his party.  Luckily, that didn't really put a damper on anything, and she got to enjoy the party a little bit.

She has been eating pretty well.  We offer her a sippy cup of milk at almost every feeding (other than when it is a nurse feeding her - the nurses need orders for EVERYTHING, and the written orders right now are to put everything through the tube) and she does really well.  There have been some meals where we haven't had to tube feed her at all!

She's also thisclose to walking.  She lets go of couches or tables for short times and has started bridging distances without holding onto something in between.  No real unassisted steps yet, though.  Soon, I'm sure!  She's doing so well that her occupational therapy through Early Intervention has been reduced to every other week instead of every week. We love her therapist, Patti, and we look forward to her bag of toys every week, but Zadie really doesn't need weekly OT.  We will continue with weekly speech therapy, though.  Zadie still can't make any noise around her trach, so we're working hard on signing with her, so that she has a way to communicate.  It's the cutest thing when she signs!

Zadie signing "more"

Why my baby is so quiet!

This is kind of an FYI for anyone who doesn't know much about trachs or hasn't come into too much contact with anyone with a trach.  I would say that describes most people!  It definitely described me before 9 months ago.

The comment I notice most when strangers are remarking on Zadie (other than how amazingly adorable she is!) is how *good* she is because she hasn't made any noise!  I always debate about explaining to them why she's so quiet, but usually I just nod and smile and say thank you.

Zadie is a good girl and she's generally very happy and content.  She doesn't cry often, but she's a baby and she does cry sometimes.  However, because of the trach, she doesn't make any noise except for the stuffy, congested noise coming out of her trach.  It's a pretty sad sight to see your baby crying her lungs out, tears streaming down her face, with no sound.  I can only imagine how frustrating it is for her.

A tracheostomy is an artificial airway.  The hole goes directly from the neck to the trachea, below the vocal cords, so the vocal cords are completely bypassed.  Some people can move air past the tube and up through the vocal cords.  I've heard that kids start to figure out that if they block the trach with their finger, they can make noise.  There's also a special valve that can be worn to allow the trached person to make noise.  This is a Passy-Muir valve.  Zadie has one, and we tried it once, but she didn't do well with it.  She has to learn (or be able to) blow air out her mouth and nose, and she hasn't done that in over 9 months.  So that will take some getting used to, as well as growing on her part, so that there's more room around the trach tube.

Zadie gets speech therapy weekly, and we're encouraged to talk to her a lot even though she's not babbling back at us.  We are also starting to sign with her, so that she has a means of communication until she gets decannulated (gets the trach removed) or is able to tolerate the Passy-Muir on a regular basis.

Needless to say, we can not wait until we can hear our little lady babbling, talking, screaming, whatever, all of the above!

Exciting day...

Today was exciting! Zadie met her new Occupational Therapist and Speech Pathologists from Early Intervention. They all loved her (of course!) and were really impressed with where she is right now. Zadie showed off all her best moves to the OT, including her almost-crawling and pulling up to stand. She also showed off how dexterous she is.

For the speech pathologist/feeding expert, Zadie did really well with a spoon with some applesauce on it. That was the most exciting part for me. It worries me that she takes 100% of her milk by feeding tube. I don't want her to have long term feeding issues. Seeing how excited she was to get that spoon in her mouth gave me real hope that we're getting somewhere! The therapists also said that they can tell Zadie is trying to vocalize. Hopefully soon we'll be able to try the speaking valve out on her.

Next week, we have an appointment with the surgeon at St. Joseph's to talk about a plan for palate repair!