As our kids get older, they become wiser.
What scares me about the future is thinking of all the kinds of situations Alaina is going to encounter. Right now she is still too young to understand the reason for things, so when I give her, her medications she never throws a fit, she doesn't cry, but because she's not aware of what exactly is going on. The future is right around the corner, so why not start taking the future into consideration? As far as when she begins going to school. Is she going to be alright, taking her meds? Is she going to be in the same classes as everyone else? Is she going to learn at the same pace as the other kids? Is it going to get harder to give her, her medications? Will she panic, throw fits when I give her her injections?.. Is she going to compare herself to other kids when she realizes she's a little different?.. Is she going to become used to it? Every child is different, so only time will tell. But if their are any parents out there experiencing the same kind of situation with their child or experienced it within themselves, it would be beneficial to leave some knowledge or advice for other parents and I to know what to expect in the upcoming future.
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Alaina is now 6 months, and as of now she is developing as any other kid would. She has been completing the necessary milestones. She rolls over ( back & forth ) She touches her toes She sticks her fingers in her mouth She grabs any object near her She grabs & shakes her toys around She laughs, she smiles She stretches She kicks her legs a lot She talks a lot : babytalk (I speak to her all the time) When she eats baby food, she does chew (even though she doesn't have teeth) She cries when she's hungry (sometimes) She hears very attentively She sees, but very limited due to nystagmus (her eyes shake unvoluntarily, can't focus on an object) & ONH (Optic Nerve Hypoplasia ;underdevelopment of the optic nerves) She is starting to sit up on her own (sometimes she sits up straight, sometimes she holds her head in unusual positions/facing down) Every child is different and and they are going to grow and complete milestones at their own pace. When it comes to weight, Alaina is underweight. When she was a newborn to 2-3 months she always had feeding problems. She was on similac advance since birth, but over time she grew a tendency in spitting up her milk (throwing it up) & also diarrhea. We found the solution to that issue, her pediatrician changed her formula, to similac for spit up (it's a thicker formula) & has been great ever since! Ever since we changed her formula, she eats a lot more, but she hasn't really gained weight.. Today Alaina received her 6 month shots & of course they checked her vitals. For a 6 month old she weighs 12 lbs 11 oz. The normal weight for a 6 month old is a about 16 lbs. With that being said Alaina still fits into 0-3 months clothing, but is currently wearing 3-6. Comparing Weight Alaina being older, you can still see the difference between the two. Height wise, she is 25.2" long. Normal height for her age is between 25"-26" long. So she's growing just fine! Due to the underdevelopment of the pituitary gland, Alaina's eyes have been affected. Her eyes shake uncontrollably, (not a lot but sometimes). They wander a lot, and she can't really focus on certain objects for a long time. You can't really notice until you pay close attention. She does have Optic Nerve Hypoplasia (ONH) in both eyes, but it's more severe in the right. Her opthomologist, has been checking on her since she was in the NICU. So they always noticed her left eye reacted more than the right. As of now she is too small to tell how much vision she has, but we do know she has little. It gets sad over time, because I wish she would look directly at me. Although in the picture her left eye seems to be looking right at me, her right eye is hard to tell. She does hear great, so it helps balance the situation out. She does follow my voice, so she usually turns her head into the direction in which she hears me. But over all, she's developing well. Thanks to God!
Aslong as she never forgets to give me a smile! :) 5-6 am: (depending on last feed), I wake up my daughter (Alaina) for her first feeding / Change her diaper. She feeds every 3-4 hours : 6-8 oz 8am: She takes her first dose of hydrocortisone (1/4 of a tablet) / Change her diaper She takes hydrocortisone every 8 hrs, 3x a day.
9am: Feeds again, goes back to sleep. 11am: Officially wakes up / Change diaper. Eat. Play. Sleep. Repeat 4pm: 2nd dose of hydrocortisone (1/4 tablet) Eat. Play. Sleep. Repeat 9pm: Growth Hormone Injection : (Everynight)
I always sanitize/ wash hands before
11pm: Bedtime 12am: 3rd dose of hydrocortisone (1/2 tablet) Since my daughter is also hypoglycemic (low blood sugar). I often times do check her blood sugar/glucose. I used to check it every 12 hours : 6am & 6pm. Since it has been stable, endocrine suggested I check it every couple days or when I feel the need to check it.
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Hello, everyone, for those who are coming across my blog for the first time. I am from Houston Tx. My daughter was diagnosed with hypopituitarism, adrenal insufficiency as well as other deficiencies. There are so many things that result from these diagnosis. I made this blog to share my experience. After the years I have learned that these conditions are more common than I thought. You are NOT alone. WE are not alone. |