October 2017

Since Care Pages is shutting down at the end of the year, Alex & I still want to keep everyone updated on Liam so we're trying a couple different things. We've started a Facebook group but I know that not everyone uses Facebook so I'm going to try blogging as well. I'll probably keep it set up more like the Care Page with at least monthly updates. I'll try not to be too redundant but I also want to make sure everyone who wants to can stay in the loop!

Audiology-Liam had his sound booth check & this one did show he has lost some hearing in his right ear. He now has severe loss in both. The audiologist adjusted his hearing aids & it seemed to help because we haven't noticed any less response at home. We will be extending these checks to every 6 months now instead of every 3. 

Pulmonary-We finally met to go over Liam's sleep study results from a few months back. It showed that he has higher CO2 levels than normal & is still having some apnea episodes even after having his tonsils & adenoids removed. With his CO2 levels it seems that Liam's baseline is always a little high due to his lungs. Unless it gets worse we're not going to do anything about it at this time (which means more sleep studies in our future). As for the apnea episodes, we're going to leave those alone for now too. He is able to bounce back from them on his own & the only option would be going to CPAP at night & there's no way Liam would tolerate that!

Orthoseat-After 9 months Liam finally has his customized stroller & seating system! The seat holds him in an awesome position. He is able to keep his head mid line & his arms in front of him which makes it much easier for him to interact with & explore his surroundings. We were able to get a stroller base & a base for the house so just have to move the chair between the two. 

Early On-Because we moved to a new county Liam had to be transferred to a different school system. His previous therapist had an arrangement to keep him in the home bound Early On program until he was 4. However, we lost that arrangement when we moved. He is now in the school system not Early On. Thankfully, he got a doctor's note to keep him home bound but now he is being seen by a school teacher instead of a therapist. We're hoping that he will be able to get an occasional consult from therapists through the school since we've also stopped outpatient therapies through Devos during cold & flu season. We don't want Liam without a therapist for 6 months! So big boy had his first IEP (individualized education plan) & is now enrolled in school!

Swallow Study-This was scheduled before we quit therapy & we decided to keep the appointment just to see what's going on. Liam did not do so hot. He aspirated water & nectar thick liquids. He barely passed honey thick but was able to safely swallow purees. The technician said his oral skills are very poor. I was not impressed by the way the test was run & won't be taking him in for another one anytime soon but it's good to know that at least it's safe to keep practicing certain foods & hopefully strengthen his oral skills. 

ENT-Even though we decided not to go through with cochlear implants Liam's ENT wanted to meet to discuss the consult we had. He wants to send Liam's information to one more surgeon (since the last one was less than helpful). He said even if we don't want to do implants for a few more years he'd at least like this other guy to look at Liam's case. I agreed but am not super optimistic at this point. Alex & I are comfortable with the input Liam is getting from just his hearing aids & aren't ready to put him through a surgery that might not work. 

Phew! What a busy month! November will be pretty slow appointment wise with only Liam's home bound schooling & a 3rd birthday!!! This sweet boy has grown up far too fast!

Liam's new chair!