6 months can make!
(I wrote this May 4th... and forgot to post it... )
A little over 6 months ago, Liam was discharged from the children's hospital at UNC Chapel Hill.
Having Nolan home, for almost 3 months now, has been so wonderful! He has continued to work/fly a lot since he got home, but to have him be able to come home for lunch and come home at night (unless he is on duty or out of town for a few days) has been such a blessing!
Having Nolan home, for almost 3 months now, has been so wonderful! He has continued to work/fly a lot since he got home, but to have him be able to come home for lunch and come home at night (unless he is on duty or out of town for a few days) has been such a blessing!
Some days have been great, some fair, some not so good, but overall Liam has come sooooo very far! :-) Just in the past few weeks we really feel like his feeding issues/difficulties (whatever you might want to call them) are become less challenging and we are starting to see a light at the end of the tunnel! :-) He is doing so much better at "chewing" / "moving the food from side to side" with his tongue and trying some new textures... when he is feeling bold.. haha
He has gained a solid 4 1/2 pounds since he was 10 months old! (Now a solid 5lbs in 8 months time!)
He still has feeding therapy on Mondays at 11am with Ms. Megan, who was also his Occupational Therapist who helped Liam regain/increase the use of his right arm/loosen his neck so he wasn't always looking to the left, which come to find out was more than likely due to a birth injury - brachial plexus - thankfully mild.
We continue to tweak 2 of his 3 medicines, but we were told at our April GI doctor appt that these medicines and the tweaking of them are really our only option to continue to help Liam.
Cyproheptadine - aka Periactin - appetite stimulant -
In October he was prescribed 4ML - twice daily... then we began to cycle it in February? 5 days on 2 days off (as it loses effectiveness) for four or so months until Liam started vomiting his entire dinner on the first "off" day, for all of March, so now we are doing 5 days of his normal dose and 2 days of 1/2 of that dose.... so far, no vomiting for a month! :-)
At one point, (I think back in November?) I was so tired of "medicating our child" that I took him off of this for one week; I wanted to be SURE that there really was a need for it.. I got my answer - yes - it is working wonders! His intake the week I had taken him off of it was 45oz of formula, the week I put him back on it.... OVER 90oz of formula... I highly doubt that was a fluke, I was doing everything the same, he was just MORE hungry!
I am now wondering if this antihistamine is managing his seasonal allergies, because he seems to become a snotty mess on the days he has the low dose / when he used to get none... ah, always a question mark! haha
In October he was prescribed 4ML - twice daily... then we began to cycle it in February? 5 days on 2 days off (as it loses effectiveness) for four or so months until Liam started vomiting his entire dinner on the first "off" day, for all of March, so now we are doing 5 days of his normal dose and 2 days of 1/2 of that dose.... so far, no vomiting for a month! :-)
At one point, (I think back in November?) I was so tired of "medicating our child" that I took him off of this for one week; I wanted to be SURE that there really was a need for it.. I got my answer - yes - it is working wonders! His intake the week I had taken him off of it was 45oz of formula, the week I put him back on it.... OVER 90oz of formula... I highly doubt that was a fluke, I was doing everything the same, he was just MORE hungry!
I am now wondering if this antihistamine is managing his seasonal allergies, because he seems to become a snotty mess on the days he has the low dose / when he used to get none... ah, always a question mark! haha
Erythromycin - yes, an antibiotic - for gut motility -
It is given in such a small dose - 3 times daily - that it does not have the antibiotic effect. It has truly helped to "keep things moving" if you will.
It is given in such a small dose - 3 times daily - that it does not have the antibiotic effect. It has truly helped to "keep things moving" if you will.
I have also tried taking him off of this one and Liam will immediately go back to his old ways... "3-5 bites of food" and he is all done! We have recently started cycling this one too... We were supposed to try 2 weeks off, then 2 weeks on, after 3 days of Liam eating little to nothing, aside from some Elecare Jr Vanilla, I put him back on it and his eating picked right back up! After almost 2 weeks back on it, it seemed to stop working so well, so currently we are on day 2 of 3 days of being off it it again....
Prevacid - given morning and night to reduce/neutralize acid from reflux -
His night cough and coughing after eating has been gone for quite sometime, but there are still times I wonder if he is still refluxing because I can hear food/liquid coming back up... Unfortunately the medicine doesn't prevent the reflux, it just keeps it from being painful.
Coconut oil, Duocal and Ensure Enlive! Apple Juice have also been key factors in Liam's weight gain! And let's not forget to mention the nightly feeding at 2-4am... LOL I am happy to get him those extra 150-200 calories, but I am getting a little tired too! (I am pretty certain this feeding is medicine induced, but when I don't give him the medicine, he vomits, so this will be a topic of discussion at our June GI appt)
Through all of this Liam has continually shown us that he remains developmentally appropriate and then some! We could not be more grateful! :-) He is labeled "Failure to Thrive" because his weight is so low for his age, but his brain is still getting what it needs to grow and become a normal busy, smart, inquisitive toddler!
At the end of September/beginning of October I purchased Baby Signing Time 1 & 2 and had Liam sit in his bouncer/exersaucer thing while he watched 28 minutes of it, so that I could get a shower each day while Nolan was still deployed... He LOVES all 4 of his "baby" videos and will ask to watch them!
We continue to be amazed at how much ASL sign language that Liam uses daily!
- eat
- more
- please (began using in late March)
- all done
- cracker
- thank you
- dog
- cat
- horse
- frog
- bird
- star (he pointed to a star on my shirt the other day and said "star" verbally)
- wait
- help
- outside
- flower
- up
- train
- bus
- potty
- sleep
- baby
- again
- hot
- hat
- rain
He is also VERY verbal, but often times will try to say the word AND use the sign.
Dog - pat your leg or pat your leg and snap - seems to be his favorite word - along with "nanny" for Sandi :-)
Until next time! :-) Thanking God for his continued blessings and modern medicines!
His night cough and coughing after eating has been gone for quite sometime, but there are still times I wonder if he is still refluxing because I can hear food/liquid coming back up... Unfortunately the medicine doesn't prevent the reflux, it just keeps it from being painful.
Coconut oil, Duocal and Ensure Enlive! Apple Juice have also been key factors in Liam's weight gain! And let's not forget to mention the nightly feeding at 2-4am... LOL I am happy to get him those extra 150-200 calories, but I am getting a little tired too! (I am pretty certain this feeding is medicine induced, but when I don't give him the medicine, he vomits, so this will be a topic of discussion at our June GI appt)
Through all of this Liam has continually shown us that he remains developmentally appropriate and then some! We could not be more grateful! :-) He is labeled "Failure to Thrive" because his weight is so low for his age, but his brain is still getting what it needs to grow and become a normal busy, smart, inquisitive toddler!
At the end of September/beginning of October I purchased Baby Signing Time 1 & 2 and had Liam sit in his bouncer/exersaucer thing while he watched 28 minutes of it, so that I could get a shower each day while Nolan was still deployed... He LOVES all 4 of his "baby" videos and will ask to watch them!
We continue to be amazed at how much ASL sign language that Liam uses daily!
- eat
- more
- please (began using in late March)
- all done
- cracker
- thank you
- dog
- cat
- horse
- frog
- bird
- star (he pointed to a star on my shirt the other day and said "star" verbally)
- wait
- help
- outside
- flower
- up
- train
- bus
- potty
- sleep
- baby
- again
- hot
- hat
- rain
He is also VERY verbal, but often times will try to say the word AND use the sign.
Dog - pat your leg or pat your leg and snap - seems to be his favorite word - along with "nanny" for Sandi :-)
Until next time! :-) Thanking God for his continued blessings and modern medicines!
