January 10- I can't believe it!

We just got back from a very long day at Cleveland Clinic. Lexi saw three doctors today- the Feeding Clinic, Otolaryngology and GI. Imagine taking a now very mobile 2 year old (yet not mobile enough to let just run) to 3 doctors appointments for almost 5 hours. No toys, nothing "child friendly" AND very dirty hospital floors! (I mean, Cleveland Clinic is VERY clean, but they say a hospitals is the best place to get sick!) Needless to say, it was a really long day trying to keep Lexi from crawling on the floor and/or trashing the waiting room and doctors' offices!

Here's the update:
Feeding Clinic- I may have to repeat this twice (because I had to ask the nutrionist to say it twice!) Lexi gained OVER her goal!! I said OVER her goal! They want her to gain 10 grams a day- she gained 14!! AND she more than exceeded her goal for height! She is now 23lbs 13 oz and 2ft 9 inches. For the first time EVER, Lexi is now on the growth chart!!!! HOORAY!! This is a HUGE HUGE blessing! She's in the 10th percentile for weight and 25th percentile for height! We were hoping the Feeding Clinic would tell us we could begin to lessen her tube feeds, but they would like us to continue our current course and come again in 3-4 weeks. They are working on pumping as many calories into Lexi as they can and spent a great deal of time going over how to puree various table foods with me- no more baby food for this "big girl!" Did you know you can puree grilled cheese and peanut butter and jelly? I mean- who really needs to know that...unless you have a little one that doesn't know how to chew! So, tomorrow I begin to experiment with pureeing all sorts of table foods and then freezing them for Lexi to eat. Should be interesting (since I don't really cook!)

GI- The GI doctor was thrilled with Lexi's progress and said the next time we come, she will most likely need a bigger G-tube. We'd prefer her to not NEED a G-tube, but at least moving her to a bigger tube means she herself getting bigger! We are working with the GI doctor on changing up her feeding doses and rates to get her feeds done quicker. Right now it takes Lexi almost an hour to "feed" through her tube and this becomes very tasking to chase her around the house as she crawls or cruises everywhere. If we don't watch her, she can pull her G-tube completely out, which becomes a big mess. The tweaking of her feeds will take several months, but hopefully we will eventually be able to feed her over a half-hour instead!

Otolaryngology- We have decided to go ahead and pursue another round of vital stim for Lexi. So, in the beginning of February, we will add another 3 appointments a week back on to our schedule. (Vital stim is where they hook tiny electrodes to her face and send electric pulses to her face and throat for 1 hour, 3 times a week). Once this 3rd round of therapy is done, we'll attempt yet another swallow study to see if she still aspirates on thin liquids. Lexi also apparently has an extreme amount of ear wax in her right ear and they are concerned it is affecting her hearing. The doctor tried to remove it today, but keeping a squirming, screaming 2-year old still was not working well and they were concerned about damaging her ear drum. So, we will give her drops in her ears twice a day and "get to" go back to Cleveland Clinic in 2 weeks. The droplets should make the process a little easier! Once this is done, we will repeat the hearing test that she failed a few months ago!

Prayer Requests:
We go back to Cleveland Clinic on January 27th for Lexi's ears and an opthomology appointment. Pray all goes well and that the roads stay clear- traveling to Cleveland can be a bit tricky this time of year with all the snow they get!

Pray that Lexi continues to gain weight (and a HUGE praise she has gained so much). Also pray that I am able to figure out this whole pureeing process! We would really like for Lexi to learn how to chew to eat "normal" food but the Feeding Clinic said they have a little of kids that are unable to chew and do not require a feeding tube- pureeing food only changes to texture, not the calories! So, we will pursue this option with an open mind!

We hope you all had a Happy start to the New Year! We will post again after her next round of appointments!