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starrdiva211
member
Had a tough Sunday... Allow me to introduce myself and The Lil Emperor
starrdiva211
member
Hi There!!!!
I dont think I have formally introduced myself. I have replied to some threads and have done a lot of lurking...and I recognize some names from the Preemie board.
The Lil Emperor (DS) was born 11 weeks early in September 2012 which makes him almost 2 (Times really does fly!!!). HE was born early due to PIH and IUGR due to my fibroids. He was born with EA/TEF that was repaired when he was two days old. He was in the NICU for 55 days and of those 55 days he was on the vent for 3 weeks and transitioned to Bubble CPAP and then regular nasal oxygen pretty goo. He was able to come home before his due date because he had done so well! But of course as time goes on, the realities hit you that your preemie may not be catching up like folks said they were and just like in the NICU two steps forward, three steps back.
He currently isnt walking but can crawl like no other and climb on everything. We currently do PT nine times a month (it started off for his Torticollis at 6 times a month and just transitioned into working on walking and movement at his re-eval in February). He sees ECI (Early Childhood Intervention) 2 times a month to work on play skills and such. We just had his re-evaluation with them and that is when I got hit with the big guns of him being further behind than I thought (he measured at 13-14 month old and they stated that according to their guidelines, they stopped looking at adjusted age at 18 months). The recommendation from the NP who did the evaluation was we start OT as well and get an evaluation which we did. The recommendation for OT is to do it 2 times a month (havent started yet though). And then there is the feeding...
He currently does feeding once a week outpatient (did in-home and it was a disaster...did more harm in my opinion). They would like to increase seeing him to 2 times a week but may have to wait until September to do so because of insurance issues. What makes me sad is that when we started solids in May '13 he took to it fine and had no problems. In August '13 he just stopped! I dont know if he had a bad experience at daycare or what but it became an issue and which is why we started feeding therapy because kids with the EA/TEF normally do. He has also had a dilation on his esophogus this past March. We have gotten a lil better and have ups and downs but it is not consistant and I keeping telling him he cant live on Pediasure, Goldfish, and Rice Krispies alone LOL. Because he doesnt eat, he is so skinny. He did gain weight but not a lot but did get longer so the pedi isnt worried. Since he doesnt eat much and is such a mover everything he takes in he burns off. His speech is delayed as well. He says the MaMa and DaDa and ask for his bottle and will repeat what he hears (even some swears words) but not at what a 21 month should be at (or adjust age 19 month).
Despite it all, The Lil Emperor has been a happy boy and has been experience what I guess are the typical toddler tantrums/growing pains (even though I do worry when should I start worrying about behavioral issues). Today for some reason has been a really tough Sunday for me :-( Today in church I had to go check on him because they gave him an animal cracker and he started gagging to clear it up and I forgot to explain to them to break the cracker up and that him doing that is him clearing it out (something that is going to be lifelong). Then as we were leaving, a little boy who is younger than him was walking in the parking lot with his mom as I carried my son to the car. I think the kicker was at dinner time when he of course didnt touch his bowl and just did Goldfish. As I let him play after dinner, I cried silently at the sink because it hurts and I feel like I am constantly failing him and I dont know what else to do.
Sorry this was so long. Thanks for being my sounding board :-)
I dont think I have formally introduced myself. I have replied to some threads and have done a lot of lurking...and I recognize some names from the Preemie board.
The Lil Emperor (DS) was born 11 weeks early in September 2012 which makes him almost 2 (Times really does fly!!!). HE was born early due to PIH and IUGR due to my fibroids. He was born with EA/TEF that was repaired when he was two days old. He was in the NICU for 55 days and of those 55 days he was on the vent for 3 weeks and transitioned to Bubble CPAP and then regular nasal oxygen pretty goo. He was able to come home before his due date because he had done so well! But of course as time goes on, the realities hit you that your preemie may not be catching up like folks said they were and just like in the NICU two steps forward, three steps back.
He currently isnt walking but can crawl like no other and climb on everything. We currently do PT nine times a month (it started off for his Torticollis at 6 times a month and just transitioned into working on walking and movement at his re-eval in February). He sees ECI (Early Childhood Intervention) 2 times a month to work on play skills and such. We just had his re-evaluation with them and that is when I got hit with the big guns of him being further behind than I thought (he measured at 13-14 month old and they stated that according to their guidelines, they stopped looking at adjusted age at 18 months). The recommendation from the NP who did the evaluation was we start OT as well and get an evaluation which we did. The recommendation for OT is to do it 2 times a month (havent started yet though). And then there is the feeding...
He currently does feeding once a week outpatient (did in-home and it was a disaster...did more harm in my opinion). They would like to increase seeing him to 2 times a week but may have to wait until September to do so because of insurance issues. What makes me sad is that when we started solids in May '13 he took to it fine and had no problems. In August '13 he just stopped! I dont know if he had a bad experience at daycare or what but it became an issue and which is why we started feeding therapy because kids with the EA/TEF normally do. He has also had a dilation on his esophogus this past March. We have gotten a lil better and have ups and downs but it is not consistant and I keeping telling him he cant live on Pediasure, Goldfish, and Rice Krispies alone LOL. Because he doesnt eat, he is so skinny. He did gain weight but not a lot but did get longer so the pedi isnt worried. Since he doesnt eat much and is such a mover everything he takes in he burns off. His speech is delayed as well. He says the MaMa and DaDa and ask for his bottle and will repeat what he hears (even some swears words) but not at what a 21 month should be at (or adjust age 19 month).
Despite it all, The Lil Emperor has been a happy boy and has been experience what I guess are the typical toddler tantrums/growing pains (even though I do worry when should I start worrying about behavioral issues). Today for some reason has been a really tough Sunday for me :-( Today in church I had to go check on him because they gave him an animal cracker and he started gagging to clear it up and I forgot to explain to them to break the cracker up and that him doing that is him clearing it out (something that is going to be lifelong). Then as we were leaving, a little boy who is younger than him was walking in the parking lot with his mom as I carried my son to the car. I think the kicker was at dinner time when he of course didnt touch his bowl and just did Goldfish. As I let him play after dinner, I cried silently at the sink because it hurts and I feel like I am constantly failing him and I dont know what else to do.
Sorry this was so long. Thanks for being my sounding board :-)
This discussion has been closed.
Re: Had a tough Sunday... Allow me to introduce myself and The Lil Emperor
I just did a post the other day (title is "sometimes..." about how hard it is seeing DS so far behind his peers.
BFP#2 2.5.11 (EDD 10.15.11) DS born 9.28.11
BFP#4 8.27.13 (EDD 5.6.14) DD born 4.23.14
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