Hi Everyone, I am new to this site & have been searching the web for answers on my 5 yr old daughter - but to no avail! Hopefully somebody can point me in the right direction here!
My daughter was born with cleft lip & palette, which we were not expecting at all. We had several ultra-sounds & they never detected it, even though it is quite severe & we can see it on the ultra-sounds now.
Shortly after birth, she was hospitalized for sleep apnea. But it didn't stop there. When she was 3 mns old, we had her 1st (& only to date) lip repair & what was supposed to be an in 1 day out the next, ended up being in & out of PICU for over 1 week with no answers to why she was struggling. We had numerous interns that would walk into the picu room & talk among themselves "diagnosing" her & saying scary things, but never giving us answers & to this day, we don't have answers.
During this time, she was also not reaching her milestones & we were informed that she had low muscle tone & that she was delayed in fine & gross motor skills. We were also told that she had some sort of connective tissue disorder - but they were unsure of what.
After her 1st surgery, we were in the hospital every several months fighting a new illness that her little body just couldn't fight. She got chicken pox that led to a staff infection, or would start throwing up & could not eat for a week & become severly dehydrated & refuse to eat, etc. So by 18 mn, we saw a genetics dr & he ordered a chromosonel test, which came back 47xxx. Now, this has given us answers to very few things. We were basically told she was born with 3 different wammys & we were going to have to deal with it.
But, the list goes on with her issues. Since a baby, she has had severe acid reflux. She was on medication for numerous yrs until recently. She does get pnemonia frequently from aspiration, but we believe that is due to her cleft palette & we are trying to get that repaired. Not only that, she has suffered from extreme constipation since an infant as well. She has been on & off myrilax since she was a baby & it is not uncommon for us to do a couple of enemas to get her even to go #2. Other issues are that she is extremely flat footed, lacks balance & has a severe gag reflux & it is nothing for her to throw up at the drop of a hat. She bruises extremely easily. She is 5 & it is nothing for her to take a 2-3 hr nap & then go to bed at 9p. She has always needed a nap during the day to function. She still struggles with fine & gross motor skills - for instance, she has a very difficult time writing or coloring or picking small things up with her fingers, holding a fork/spoon. For her fine & gross motor skills, she actually has taught herself to compensate greatly.
I could probably list more issues that we deal with, but I feel like there are so many issues & I am not even sure what is normal anymore. I guess we just want answers to what we are dealing with.
Obviously it is quite overwhelming & frustrating as we feel incredibly lost in this journey & need answers to why our daughter has so many issues going on with her! She is such a trooper!
Can anyone relate to what I am posting here or are we all alone?