February Happenings

*Play song, "Change" with this post

The first week or so in February was filled with catch-up and follow-up appointments for miss Emarie. After all the scariness that followed her recent surgery, I wanted to make sure we were doing everything we could to one, figure out what it was, and two, make sure we don't see it happen again!

Number one on the list was to see her GI specialist, and actually when I talked with them, they thought it would be best for her to have an appointment with the whole dysphagia team. This includes her GI doctor (Dr. Molly O'Gorman), her dietician (Sharlene Coombs NP), and various other OT and speech therapists as well. It's standard for them to do an accurate weight (in other words, naked), and all other measurements to compare her growth. So since we had to strip her down to nothing... she got a hospital gown.... and well, I could have sworn that a children's hospital should have a gown that would come close to fitting her, but well, I was wrong! 

Yeah, she looked at me like, "really mom.... really?" It was pretty funny, couldn't stop laughing!

Her stats as it stands:

Weight: 30.6 lbs, 17th percentile

Height: 38", 13th percentile

Head.... well let's just say that still isn't on the charts and probably never will be!

Last year was the first time we'd seen anything on the charts for her! But sadly, she's stayed close to the same in weight since then:

3 year stats:

Weight: 29.5 lbs, 41st percentile! 

Height: 35.25", 16th percentile

yeah, this is when she was seen as overweight for the first time ever and we were (for the first time ever) allowed to back off on her calories! 

So, it seems she is keeping the same trend. That is to stay the same for a really long time, then grow a whole bunch really fast, and then stay the same again.... pretty common among 18q- kids, and those with growth deficiencies as well. Just wish her dietician would understand this!

We got some referrals to go to an eating clinic though which I was excited about! This girl is finally showing an interest in eating but now because she's not in PEIP anymore, she does not receive any sort of feeding therapy. And she's all done with her cleft surgeries, so we are really wanting to move forward from getting her off a feeding tube! Also got a referral for an allergist.... read on for the reasoning for this.

They also drew some labs at this appointment.... poor kid! After the many, many, many blood draws she endured in the hospital (6 in 2 days, plus 4 IV's placed in that time as well!), she had to do it just a week later! But, she didn't even flinch! Love that about her.... sad as it is, that a four year old finds it so routine, I still am so lucky to have a kid that holds still and gives me the hug afterward! 

As of today, we got those results back.... and they weren't what I expected..... at all! The first I was told about was her vitamin levels, which they have been very concerned over in the past! I have been working very hard to keep those vitamins up, and it has payed off! The dietician was especially proud of her vitamin D levels since that is most commonly deficient in most children these days. I had them check her hemoglobin again as well since if there is a problem of her consistently loosing blood, then that should have showed as declining since we left the hospital. But alas, it's the same as it was the last they checked in the hospital.... which is great! But that means we still have no answers to all that went wrong so many weeks ago :/ The surprise however came in her allergy levels. 

It's routine to check these every year when you have a child with severe allergies (meaning anaphylaxis to anything). Last we checked, her egg whites were higher than anything (in the 40 range), close second was milk (in the 30 range), with egg yolks at about a 12. And soy at a 5.5. Anything over a 5 is considered a pretty significant allergy and should be excluded from the diet. She also showed slight inclines in a few things, including peanuts, wheat and a few others, but nothing to warrant concern, just something they would watch to make sure it didn't ever go higher.

New levels have most things declining or not scaled at all...... most, but not all. The egg whites has been cut to less than half of what it use to be (which remember this use to be the highest!), and yolks went down as well.... not as much, but it was lower to begin with. So, that means that more than likely she will outgrow her egg allergy all together! And at this point, we don't have to have a panic attack if she is to come in contact with it, it shouldn't cause anaphylaxis anyway..... milk on the other hand, is a completely other story. Milk more than tripled. Which means we have dim hope that she will outgrow it  :( This news baffled her dietician who said of both milk and eggs, milk should be the more likely to outgrow..... she is still getting to know how my kid is though.... she is always the exception to everything. They are likening her levels to milk as to what most people are who are allergic to peanuts..... that. is. scary. This has me so anxious. It is no wonder that she reacts just from touching it. Epipens will be with her at all times.... no exceptions. And anyone who is responsible for her care ever, will know how to administer an injection for her.... no exceptions there either. 

We will continue to check though.... every year and we will hope, but we won't expect. 

Anyway, enough of that. She also had her four year appointment (a little late I know, but things were busy in December, and even busier in January!). Not much different in her stats from the week previous, so that went well. 

The common trend though, is that all of her doctors are impressed with her progress! Anyway, we'll continue to have many other clinic and specialist appointments in the following months! Busy life that we lead! ;)

I should also mention that we decided to take Em back to school before her follow-up from her surgery (which will be on the 28th of this month). We figured she'd already missed so much, since she hasn't been since before Christmas break and if her teacher Miss Jamie wasn't comfortable with having her back while still in her wheelchair and wedge... well then no one would! Her son actually goes through a lot of orthopedic surgeries as well. So she is happy and back at school :)