It's been awhile since I've posted! In the meantime, I've been catching up on reading my other favorite blogs, organizing more ideas for TEAM LIAM and basically staying busy! I can't believe summer is more than halfway over...There is a LOT to do for us around here!
Liam continues to do well, now almost 8 weeks post-op. I think we have even made it about 3 or 4 full weeks without vomiting, congestion or scary moments! His nighttime sleeping seems to be the only thing that remains a mystery and an issue for him. Last night, he awoke every 1-2 hours crying and was unable to console himself back to sleep. Thankfully, when I check on him, I can quickly get him quieted, but it is starting to take a toll on me as I am not getting much sleep. This has been going on about 3 weeks now...and I just don't like the cry-it-out technique very much, I don't think it's good for either party involved. So, I am starting to make little changes each night, trying to rule out what might be causing him to wake up. Tonight, we fed him a little later dinner than normal, and I am going to cut his 9 pm sleating feed out...to rule out reflux. It's just hard with no road map....try this, try that. I feel like that's how we have navigated raising him his whole life! We do have a cardiologist check-up appointment on Thursday, so I am hoping to ask some of my questions then. I am also curious, now that he is getting older and can eat more solid foods, how much formula we can go down to on his tube feedings (aka, cutting out the night feed maybe for good). Since his heart is probably still working harder than a normal heart, I need to see how many calories he needs daily and then work out a feeding schedule from that.
I am also planning on having another swallow study done pretty soon, hopefully within the first couple weeks of August. I am very anxious about it and praying hard that we can finally start moving down the road to him taking a bottle (or by now, a sippy cup!). We have been practicing a little at home with some honey thickener the therapist gave us, but Liam does not seem the bit interested in drinking or sucking down anything. If only there were a feeding attachment for a Soothie pacifier, as he still sucks the daylights outta those things!! And yes, I know they say for use 0-3 months....but sometimes you just gotta stick with what works around here!
So many things...I am feeling the strong urge to go write lists after list of things I need to do...AND Liam's 1 year birthday is quickly approaching too! I am excited for the next few months, but it's gonna take a lot of long hours to make everything come together on all fronts!
TEAM LIAM - Update
Speaking of coming together, I am going to start updating my progress on TEAM LIAM with each post I do. So at the bottom of each blog post, I'll add a quick paragraph or too with where we are at, so be on the lookout! I will also post that portion directly to the TEAM LIAM page on my blog as well, so if you just want to read those happenings and not my other rabbit holes, feel free to go to that page for updates as well!
As of right now, we have a growing running team! Several friends have stepped up to the plate to join TEAM LIAM in Running the Rock! We have runners doing both the half-marathon and full marathon, so if you are still thinking, gee, I would really love to run for Liam, then you should join us! The marathon only allows a certain number of participants, so once you decide, you should sign up soon at www.runtherock.com. Plus, your registration fee for the race goes to benefit Texas Scottish Rite Hospital, which is another great charity!
Right now I am working on getting corporate sponsorship letters prepared for those kind folk who would like to ask their workplaces or community businesses to help financially support our cause. If you are interested in sending out corporate sponsor letters, please send me an email at tara@johnsonheartbeat.com so I can email you the official letter with all the info. I am hoping to have these ready by August 15th, and hopefully I can figure out a way to link an attachment on our website for download as well!
Stay tuned...it's only going to get better!!
Liam is such a cutie!! Glad he is doing well. Hope things get worked out with his night time owl status. It is hard to tell what it is. Could possibly be related to the hospitalization. Logan always seemed to be that way after a surgery. I think being messed with round the clock is enough to cause anyone to wake up at night.
ReplyDeleteHope the swallow study goes well. Don't worry too much about the drinking thing. It will happen just give it some time. We went through that with Logan too.
Did you know soothie makes bottles with the same pacifier attachment? My friend uses them and really likes them! So glad your sweet Liam is doing well. We continue to keep you in our prayers.
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