Jahira’s CDH Journey October 2019 update

Jahira’s CDH Journey October 2019 update

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I hope this day brings you peace
welcome back I am Sharrica latrice. alright guys i have tried to sit down so many
times to do this video so i’m giving myself about a good five or ten minutes
to get this done hopefully the little one does not come running and calling my
name and interrupting but i decided to also show you a video of me unboxing and
organizing Jahira’s medical supplies because i did plan on posting this video
before but there’s been so much going on these last few weeks that i just have
not had a chance to so i’ll have this video up of me unboxing and give you some
updates on our little girl. so the last time i spoke with you guys Jahira was
about to go to her gi appointment, her gastroenterology appointment and at this
appointment we were going to decide if she was getting the g-tube or not and
once we got there her specialist was so impressed with her improvement since the
last appointment. he decided to extend three more months so he
extended until November and he said it was okay to take out her feeding tube at
times to see if we can get her to eat everything by mouth so last time we
spoke she was eating pretty much everything but we were still having to
put her milk into her tube because she wouldn’t consume enough fluids. she’s
still kind of having the same issues we still battle with getting enough fluid
into her but I’m happy to say that she’s been without her tube consistently for a
week now and we bought a scale to make sure that, you know, she doesn’t get to a
weight that’s critical and she’s been maintaining her 23 pounds we would like to
see her gain but I’m happy with her maintaining for right now you know it’s
baby steps. so she is eating and drinking everything
orally for the last week and she’s maintaining her 23 pounds and that’s a
huge accomplishment the only thing is she’s still not quite getting all of her
milk and all of the fluid that they want her to consume in one day. we’re working
on that, we still have until November so we’ll keep trying. Jahira’s left side has
always been a little bit weaker than her right side because the left side is
where she had her diaphragmatic hernia and it’s also her repair site surgery
they placed a drain on that side as well to drain fluid from her chest so she’s
had a lot of things going on on the left side so it’s understandable that that
side is a little weaker than the other through lots of therapy and
consistency we’ve been able to get both sides to look really uniform so if you
looked at her you really couldn’t tell. she had gotten really great, no issues
or worries with that, we were just building up on her stamina because she
doesn’t have the stamina of other kids her age because of her lung capacity so
after a certain time of working or moving or playing her work of breath or
her ability to kind of oxygenate is a little less than other kids. but we’re
working on that and she’s doing great, so we noticed that her left leg seems to
start not supporting her as well as it was so she stumbled a lot all of a
sudden and then maybe a week or two later we noticed that her hands and feet
would get cold but that would be like on both sides not just the left side so we
were thinking maybe there’s an iron issue but then every time she received
an iron test her iron levels were great next we noticed that she would start to
walk on her tippy toe on the left side but walk regularly or flat-footed on the
right side and then she started to begin to snatch or scratch at the left leg as
if it was irritateing her, as if she was feeling something and then also with the
her cold hands and feet the rest of her body will be warm. and so she got to the
point where she would stop what she was doing and then come and try to tuck her
hands and feet somewhere where they could warm up and
they warmed up pretty quickly. we notified her therapist about what was
going on, we weren’t quite certain if it was just kind of standard or if it was baby
muscle tone or something and her therapist let us know that we need to
also advise her team, medical team of what was going on as well so we
called her cardiac and pulmonary team and let them know they don’t think it’s
related to her pulmonary hypertension because her results looked so well the
last time she was there and they will be checking on her again in December. we
also let her pediatrician know, he looked at her and said she looks great he
doesn’t really think there’s anything to worry about considering what
she’s been through he said she looks wonderful but to be on the safe
side he decided to send her information to her neurologist and he wants the
neurologist to check for hypoxia or CP and hypoxia is basically possible damage
to the arteries or veins because of lack of air and if you’ve watched her videos
from when she was born, she was cyanotic
so she was blue once she came out. he wants those two things to be checked out
he doesn’t think she has them but he wants to be safe because she is kind of
displaying some of the signs so we’re waiting for that appointment but um some
other good news is that Jahira has completed some development evaluations
and we haven’t gotten her official evaluation we won’t go to the
development clinic until next year but these are evaluations from her therapist
and from her doctor, kind of like when you do the 18-month checkup and things
of that nature so they usually encompass different categories like social and
emotional skills, gross motor skill,s fine motor skills
speech, and cognitive skills. so overall, taking all of that into consideration
overall it looks like she’s only 2 months, around two months behind. now when
she was originally evaluated she was considered three-and-a-half months
behind so it looks like she’s catching up. we’re so excited to hear that. were
rooting for her to fully catch up and to live as normal a life as possible.
if some of those skills are taken individually she meets or exceeds them
with no problem it’s just some of the other skills that she has not quite met
that bring her overall score back down but again we make some concessions for
her because of what she’s been through. so just to hear that she’s improving or
catching up, it’s wonderful but even if she was not catching up this well we
would still be so happy to have her with us and to and to be able to experience
her growth and her love for her sisters and learning new things and playing. she
keeps us all laughing she’s always learning a new word or a new trick and
she loves to show it off and we are just blessed to have her. we’re blessed to
have all of our girls, but that’s pretty much what I needed to update you guys on
with regarding Jahira I will probably have another update for her maybe
December I just want to give time for us to get to those appointments that we
need to get to and also at least have another chance to do her X-ray.
she has an x-ray coming in november as well to check on the status of her surgery site to make sure that she
doesn’t re herniate so that’ll be something that we do in November as well
as her GI appointment in December she has a cardiac clinic again so it’ll
probably be December before Christmas when I the update with Jahira again
unless something drastic changes.

3 thoughts on “Jahira’s CDH Journey October 2019 update

  1. I can say that I truly understand your experience. I had 2 sick children with different issues. You are strong and I'm so happy that your girl is making progress!

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